When I began work on my first memoir, I started by doing a theme analysis. I was working on a PhD in education using a methodology known as autoethnography. I began the process by analyzing my blog posts – which I had written as “field notes” while living through breast cancer treatment. Once I had identified themes, I identified the key posts that demonstrated the themes, as well as the posts needed to glue the story together. I re-wrote with a more evocative style based upon what I had learned from reading Evocative Autoethnography and other books by Caroline Ellis and Art Bochner.
I finished the first draft of my dissertation then decided not to complete the PhD. Although I think the insights I developed and shared as a result of the research I did were useful, I felt like my illness narrative was lost in the process. I felt like the focus was wrong. I wanted to tell my story, and I felt like something was missing in the way I was telling it.
After a couple of years, I dusted off the chapter I had written that was my story. I edited it again, updating the story to tell it in present tense. I hired an editor. I shared it with several friends to get their feedback and collect their edits. Then I took the leap and self-published it – first on Amazon then moved it over to Draft2Digital so that it could be available on many different platforms.
My first memoir, Never knew I wanted to be a breast cancer survivor, was born out of the autoethnographic research I did.
I’m working on my second (and third) memoirs. They are coming from a very different place. They are being written for the sake of the story. The focus is much more on the narrative. I’m sharing my lived experience and doing my best to bring the reader along for the journey. The focus is no longer on themes, but rather on the story itself.
I recently applied to and was accepted into an MFA in Creative Nonfiction – another academic journey, but this one is focused on the story for the story sake, rather than the story for the research sake. It feels more appropriate to what I wanted to be doing with the story in the first place.
I have been reflecting on what the difference is between autoethnography and memoir as both involve an evocative storytelling and both involve types of research. I started by asking chatGPT to do deep search/research on the difference between autoethnography and memoir. The result was interesting if not a little verbose.
I asked myself, what does this mean to me.
The first difference for me is in the audience. Autoethnography is written for academics. Memoir is generally written for a wider audience – the general public or a specific subset of the general public.
The real difference is in the purpose. Autoethnography at its heart is about the analysis of the experience. Memoir is about sharing the experience itself.
As someone writing illness narrative, I see more value in sharing the experience itself. For me, personally, I see and hear about how my memoir has impacted the lives of others. That to me is the value in memoir and in my case, that is the value in sharing my illness narrative.
This post is a continuation on my discussion about Patient Health Literacy. The narrative that resulted from this study has been published on Amazon. See my Memoir page. The original source that I used for my study can be found at https://bcbecky.com.
In reviewing the posts categorized as Navigating the healthcare system, I constructed the following themes: (1) learning processes, (2) taking control, (3) dealing with insurance, and (4) waiting. The theme learning processes applies to posts where I describe the different interactions I’m having with healthcare providers. The theme taking control applies to posts where I voice my need to empower myself or others by exerting some form of control over a situation. The theme dealing with insurance applies to posts where I write about issues insurance coverage of medication and treatments. The theme waiting applies to posts where I write about issues with waiting for various test results or treatments. I discuss each of these themes in more detail in the in the following sections.
Learning Processes
In the beginning I had no understanding of how the medical system worked with respect to cancer treatment. My understanding came only from what I saw on television and from an acquaintance that I sailed with 15 years ago who happened to be a medical oncologist. From that, I knew that there were different types of oncologist, but I did not understand that breast cancer treatment typically begins with surgery. Throughout the blog, I explore and share my interactions with the medical system, as I learn to negotiate it.
In Canada, I likely would not have had much choice in where I received treatment. I also would not have thought that a I had any choice in surgeon or oncologist. I would go to who I was referred to. In the US, and specifically in the area where I live, there are multiple providers. In some ways insurance affects where you get treatment, but I had really good insurance that allowed me the option of choosing. After hearing the words ‘you have cancer’ I felt an immediate sense of lack of control. The ability to choose a healthcare provider, although stressful and a completely new process for me, was also a way to exert some control over the situation.
As all the processes were new to me, I explained them in detail as they occurred. For example, in A long day (June 19, 2014), I explain the process of the appointment with the surgeon as well as the “whirs, honks, and other sounds” associated with my first experience with magnetic resonance imaging (MRI). I continue with the description of processes on my first day of chemotherapy, where I also include images that provide visual documentation of the process (First day of chemo, July 7, 2014). Further, in This too shall pass (July 16, 2014), I describe how:
They don’t give you much other than anti-nausea meds for the first cycle, and they wait for you to call. The idea is that everyone experiences chemo differently, so they don’t know what you will need. They wait until they find out what you need then prescribe it. At this point, it is all about managing the symptoms. Unless the problem is life threatening (more life threatening than the cancer), the goal is to keep with the chemo regime on schedule through to the end.
In addition to describing the medical process, I also described what I learned about the process of gathering information from my care team. In I had to give myself permission to nap (July 9, 2014), I outline what I learned about how nurses and physicians provide different levels of information:
Nurses tend to provide advice on the extreme side of things. For example, absolutely no alcohol, no swimming, no biking. They tend to provide advice based upon the worst-case scenario, but also discount mental health. The need to exercise is important to my mental health. The oncologist is good – he explains the chemo cycle – and says it is OK to swim the first week, but as my white blood counts get low to stop swimming until the counts return.
My analysis also shows that, in addition to describing the processes as I recalled them, I also wrote about my observations regarding medical education from the interpersonal perspective:
What has been interesting is that this seems to be part of the learning process. Those who are most empathetic are the attending surgeons. The residents are still learning, so their interactions can feel a little mechanical – they are still trying to figure out the best ways to make connections with patients, but also the best ways to describe things. By the time they are fellows, you see a higher level of confidence in their ability to provide patient education – and you start to see information that is more customization to your specific case. The attending surgeons seem to be the best at tailoring their discussions to your specific situation.
Finally, when I was hospitalized after surgery, I described my experience with hospital processes, specifically how a private room meant that my husband could stay the night with me, and the quality and process of getting food: “One thing that impressed me about the university hospital is that they use a room service model for food. The menu is quite good, and so far, the food has been good. The food is locally sourced where possible, and there are organic options” (An update from the hospital, November 20, 2014).
Taking Control
From the beginning I tried to take control by booking appointments for a second opinion from the university healthcare system. Here I was immediately frustrated at an inability to get an appointment without a confirmed pathology. Fortunately, they did guarantee me an appointment when the pathology results were confirmed (The speed of things, June 15, 2014). After getting an appointment, the act itself of seeking a second opinion and making a choice as to where to get healthcare were ways that I could take control (Double-mastectomy and chemo, June 19, 2014).
When I began to experience some odd side effects, specifically blisters on my hands, that were not resolving, we made the decision to go to the emergency room. This was in part so that we could experience the process of the emergency room at a time when we were not overly stressed – that is, “while I was happily ambulatory and not ‘really sick’, just in case I needed the services at a later time” (Not without incident, July 13, 2014). Further, in Engaged patient in a hospital gown? (September 27, 2014), I describe the process of a typical doctors’ appointment – and how I take as much control as I can during those appointments, in this case by wearing a hoody over the hospital gown.
Dealing with Insurance
The role of insurance in the treatment for breast cancer both surprised and outraged me. I was surprised when one of the first things the surgeon told me, after telling me he recommended a double mastectomy, was the ‘good news’ that insurance was required to pay for reconstruction (How do you prepare to lose a body part?, June 15, 2014). I was surprised when the oncologist mentioned that “it also takes about a week to get approvals from the insurance company” (Caution – this one talks a bit about death, June 21, 2014) before I could start chemotherapy.
We ran into issues with insurance and treatment after my first day of chemotherapy, which required the white blood cell booster Neulasta to be administered the following day. Insurance changed the way in which it was to be delivered (Pains with the American System, July 7, 2014). Finally, with a slightly more nuanced understanding of the way insurance impacts healthcare in the United States, I write a response to a New York Times article expressing my concern “that research stated like this gives insurance companies a reason not to pay for the surgery, when it may be in the best interest of the individual” (Bilateral mastectomies, July 28, 2014).
Waiting
Waiting was something that I ran into from the very beginning. First it was waiting for the pathology results, as I could not make an appointment at the university cancer center without confirmed pathology (The speed of things, June 16, 2013). When we were deciding on where to get treatment, we knew that we would be spending more time waiting at the university cancer center. We took waiting into consideration when making our decision, specifically I write:
In the first couple weeks after diagnosis, I had decided where I was going to get treatment. I based this, in part, on where I felt comfortable – but also who provided me with the most options. I really liked being in a teaching setting and having access to more specialists – but that was balanced with knowing that I would spend more time in waiting rooms and receive less fancy care (e.g. the infusion treatment center doesn’t provide lunch).
As I went through treatment, there were many occasions where I describe what I felt to be excessive wait times. For example, “It turned into a long day. We had a delay seeing the nurse practitioner to get sign off on chemo – unfortunately that turned into a three-hour delay. Then we had a delay on the saline drip for rehydration, which added another additional hour” (AC Cycle 4, August 19, 2014).
As we became more familiar with processes, we became more efficient with our time, developing strategies to reduce the amount of time we spent waiting. When I became more confident in myself as a patient advocate, I learned to identify problems in the system and articulate them to management in hopes of resolving the issue. For example, in Learning to assert myself, (October 29, 2014), I write:
Today, I asked for a supervisor. You see, I had an appointment. The online system showed my appointment as 9:15. I was told to arrive 30-minutes prior to my appointment (which is a bit excessive). I arrived 25-minute prior to my appointment (8:50). When I was still waiting at 9:30, I went to talk to the receptionist. Anytime I’m asked to wait more than 15-minutes, I want to know why I’m waiting (that is a lesson I have learned here – in Canada I would just wait in silence – it is interesting how asking goes against my ingrained behaviour). I found out that my actual appointment was at 9:45. The online system had already added 30-minutes, and the person who made the appointment for me added another 30-minutes. This is in part why patients spend excessive amounts of time waiting.
Summary
Nursing research shows that supporting breast cancer patients with navigating the healthcare system can improve many aspects of the care that patients receive (Robinson-White, Conroy, Slavish, & Rosenzweig, 2010). My analysis of the category Navigating the healthcare system shows that I had regular interactions with the healthcare system, and there were spikes in my interactions associated with receiving pathology results, starting chemotherapy, exploring surgery options, and surgery itself. Under the category Navigating the healthcare system, I constructed the following four themes: (1) learning processes, (2) taking control, (3) dealing with insurance, and (4) waiting. As I learned the processes associated with receiving cancer care, I wrote about them. When I was able to, I sought ways that I could take control over my interactions with the healthcare system. Unfortunately, there were two areas of challenge with my experience with the healthcare system, dealing with insurance and what felt like unnecessary waiting.
Each person experiences breast cancer differently. This difference is in part related to the variable nature of the disease, but also the different healthcare systems where the patient is seeking treatment. The nursing profession has attempted to address this complexity with the creation of formal nurse navigators that help guide cancer patients through the healthcare system (Case, 2011). Unfortunately, not all healthcare systems have nurse navigators. In addition, the nurse navigators are often not fellow breast cancer survivors. This means that they cannot fully appreciate what it means to live with the illnesses associated with breast cancer and its treatments. The nurses are also insiders within the system, with knowledge and privileges that patients do not have. This can lead to a gap in what information the patient needs. Patients experiencing critical or chronic illness have a need to learn how to navigate the healthcare system from a patient perspective.
This post is a continuation on my discussion about Patient Health Literacy. The narrative that resulted from this study has been published on Amazon. See my Memoir page. The original source that I used for my study can be found at https://bcbecky.com.
From among the 237 blog posts, I coded 92/237 (38.8%) with the category, Learning about the disease. The distribution of number of days per week that I wrote one or more posts that were coded as Learning about the disease, Figure 4, shows interactions almost every week. This is particularly interesting because it shows that the learning did not just happen at diagnosis, rather I continued to learn and share my learnings throughout the study period.
Number of days per week that a post was written that has been categorized as Learning about the disease.
In reviewing the posts categorized as Learning about the disease, I constructed the following themes: (1) sourcing experts, (2) sourcing the Internet, (3) sourcing academic articles, and (4) sourcing peers. The theme sourcing experts applies to posts where I echo the information I receive from healthcare providers. The theme sourcing the Internet applies to posts where I include information from trusted Internet sources. The theme sourcing academic articles applies to posts where I include references to academic literature. The theme sourcing peers applies to posts where I describe information that I have gathered from peers such as through support group meetings. Peer sources includes blog posts of other cancer survivors. I discussion each of these themes in more detail in the in the following sections.
Sourcing experts
When I was initially diagnosed, I knew very little about breast cancer. In my early posts I would parrot back of the words I heard from my healthcare providers. For example, in It all started… (June 14, 2014) I say, “I’ve been told that the majority of women who get breast cancer do not have relatives with cancer”. As I gather more specific information, I include my interpretation and feelings associated with the information I’m receiving. For example, in Double-Mastectomy and chemo (June 19, 2014), I write not just about the disease characteristics, but also what those characteristics mean and how that translates into a treatment plan. At this point, I am echoing the information the I received from an oncologist. I’m not referencing any other source. More importantly, in this post I’m not just talking about the data itself (that is the pathology), I’m also talking about what that data means and how that information affects the recommended treatment options.
Sourcing the Internet
Within support groups, I often heard the women say to someone who is newly diagnosed ‘do not look at the Internet’. And yet, it was the Internet that I went to when I needed to look up medical terminology. When interpreting my pathology report, I tell readers of my blog that if they want more information on how to understand pathology reports, to look at http://breastcander.org. I refer to this site several times within the blog, as it provided useful information regarding breast cancer and treatment options.
When I wanted a description of medical terms, or when I wanted to validate something that I heard from either support groups or healthcare providers, I went to trusted sites on the Internet. In Significance of dates and getting ready for chemo (June 26, 2014), I write about my reflections on the chemotherapy preparation class that my husband and I attended. I share a couple of resources: a book that I found to be not very useful; and, a website, http://chemocare.com, that was very useful. I find it particularly interesting that advice is often given to ‘not look at the internet’, and yet the better and more current resources shared are those found on websites rather than books, which quickly become outdated.
Sourcing academic articles
Initially, I was unable to read academic sources, rather, I relied on my husband to do that research. However, when I had to make a decision regarding surgery, I reached into the academic literature to do an analysis on what the surgery and the expected results of neoadjuvant chemotherapy. For example, in Breast reconstruction – academic analysis (September 22, 2014), I write about the knowledge I gained through reading academic articles relating to the type of breast reconstruction surgery I was debating. In addition to sharing some of the key findings from the academic articles, I also shared terminology definitions such as “Autologous reconstruction is reconstruction that involves the patient’s own tissue (e.g. DIEP flap, TRAM flap).” In Pathological Complete Response (September 23, 2014), I write about the knowledge I gained, and my interpretation of academic articles associated with the expected outcomes of neo-adjuvant chemotherapy. I not only provide key findings, but I provide my commentary on the findings. I’m sharing both the findings from the articles and my interpretation of that information and how it applies to my situation.
Sourcing peers
In addition to healthcare providers, friends connected me to a fellow breast cancer survivor. I see echoes of conversations I had with here in my blog, for example when I say “choose who you want to trust, and then trust them” (A long day, June 19, 2014). By the time I was to start treatment, I was familiar with some of the expectations around treatment. For example, in This too shall pass (July 16, 2014), I say that “during support group last Saturday, one of the ladies explained what the Neulasta bone point felt like. I had been warned.”
Perhaps the biggest benefit from support groups was the normalization of medical terminology and the generic breast cancer treatment process. Specifically, in A photo shoot and getting ready for surgery (November 18, 2014), I write about the process of the surgery. I specifically talk about the “injection of some nuclear isotope into each breast that helps to identify the sentinel node, and the insertion of wires to guide the surgeon to the exact location of each of the tumors”. By the time I wrote about the procedure, the concepts had been ‘normalized’ for me. I had heard about it so many times at support group that I came to think of the process as ‘normal’. It was just something that I needed to do. Further, in Breast reconstruction – Academic analysis (September 22, 2014), I point to another blogger’s post before I refer to the academic literature: “First off, I should start by pointing out an important blog post written by Nancy Stordahl on why breast reconstruction is not a boob job (2013). When looking at patient satisfaction, I focused on post-cancer reconstruction which is a lot more complex than cosmetic reconstruction.”
I don’t share a lot of the medical information that I received in support group. In part because I often validated this information with my healthcare provider and then reported it in my blog as being from my healthcare provider. In Flyin’ (November 26, 2014), I write about information that I learned from various support groups pertaining to lymphedema, and then how I looked into the academic research about it, sharing some key points from the research. Here I am showing how the information I received through support group helps me know what to look up, but also how I do not directly trust the information in support group, rather I look to more trustworthy sources.
Summary
In order for patients to be partners with their healthcare team in making appropriate decisions, patients need disease-specific information (Wallberg et al., 2000). When I was diagnosed, I knew almost nothing about breast cancer. I needed to use multiple sources in order to learn about the disease. My analysis of the category Learning about the disease shows that I continued to learn about the disease throughout the treatment process. Under the category of Learning about the disease, I constructed the following four themes (1) sourcing experts, (2) sourcing the Internet, (3) sourcing academic articles, and (4) sourcing peers. Within these information sources, I did not only share the information directly, I also shared the way in which I was interpreting the information. In addition, as time progressed, I increased where I received my information, using multiple sources to validate what I was learning.
I began my learning about breast cancer through information I received directly from expert sources, that is my healthcare providers. When I needed clarification on terminology or more detailed medical information, I sought out trusted Internet sources. When I was ready to read academic literature, I searched the literature for information that would help me make treatment decisions. The different information and advice sources sometimes overlapped, where at other times they didn’t. I had to learn how to discern not only where I could get information, but also what types of information I could get from where, and how reliable that information was. There were so many nuances to information that I didn’t always appreciate at the time, and some that I still don’t appreciate. Throughout the process I negotiated the information that I received from expert sources, Internet sources, and academic sources. Although I gathered information from peer sources, I did not directly trust that information, rather I used trusted sources to validate what I had learned through peer sources. Patients experiencing critical or chronic illness have a need to learn appropriate sources for different types of information to help them learn about the disease and what it means to live with the disease.
Where do you find your health information? What sources do you find reliable? Where do you learn about how to live with the disease?
I had been told that the book release was imminent, but I didn’t really believe it. Then, earlier this week my Google Scholar alert popup up with the book Chapter that I coauthored: We need to talk about ethics and social media: a conversation.
Last summer Marie Ennis O’Connor and I spent many mornings/evenings having conversations about the ethical use of patient information that is shared on social media. We brought our thoughts together in a book chapter titled “We need to talk about ethics and social media: a conversation”.
It is nice seeing the article online (I don’t have a print version yet). But even nicer was the memory of time spent with Marie writing the chapter. The time we spent working out the format, and figuring out how it would all come together. We spent a lot of team reading the seconds out loud to each other. We also had to work through regional language quirks.
I’m a Canadian living in California, she is Irish living in Ireland. In Canada we have family doctors, in the USA we have Primary Care Physicians, and the Ireland they have General Practitioners. We have specialists, they have consultants. In many ways the systems provide the same structured services, but the names are different and there are nuances.
The most important part of the entire process for me was spending time with Marie working on something that was meaningful for both of us. I’m so glad to finally be able to share it with others.
Reference:
Hogue, R. J., & Ennis-O’Connor, M. We need to talk about ethics and social media: a conversation. ETHICS FROM THE GROUND UP, 103.
I’m finding myself in a bit of a challenging position right now. I don’t know if it is a funk – or just kind of stuck. Typically, when this happens I go for a nice long hike and sort it out while I walk and commune with nature. However, after recent toe surgery (which is healing nicely), I cannot yet walk – and so, I’m going to try to express some of my thoughts in writing.
One of my research questions is “What was my lived experience as a breast cancer blogger?” I realize that even with my narrative chapter – written in the form of blog posts from my time in treatment for breast cancer, I’m not really answering the question. In part, I don’t talk to the blogging aspect of the question at all, but also, how can one express lived experience? I think I have asked an unanswerable question – which is written a little in academic-ese – as the term “lived experience” is something meaningful to academics and signifies that what I’m answering is an ethnography.
In the book Networked Cancer: Affect, Narrative, and Measurement (Stage, 2017), the author asks “Should [illness] narratives be understood as expressinglife with an illness”? The question here is that of expression rather than experience. Narratives are necessarily only part of the story. Some narrative embellish, while others gloss over. There is always a reason or purpose behind the narrative. The narrative can never be the experience. In that way, I’m not asked “What was my lived experience”, so much is “how might my breast cancer treatment experience be expressed as a blog-formatted narrative?” That, indeed, is the question that chapter 4 of my dissertation answers. Maybe, part of my challenge is that I’m struggling with a nebulous question, which then makes it more difficult to defend the answer.
The next part of my dissertation looks at what knowledges I shared on my blog, looking at the question “What knowledges did I share through blogging about my breast cancer experience?” My blog itself (http://bcbecky.com) is the data source (not to be confused with the blog-formatted narrative). More specifically, I’m using the blog posts from June 14, 2014 through February 3, 2015 – all 237 of them! as data. I’m looking at what types of things I shared on the blog – what things that could be considered forms of knowledge. Now, one could devolve very quickly into a philosophical question of – what is knowledge – which frankly, would cause me to have my eyes gloss over and make me question why I’m doing this whole PhD thing anyways – but to get it back on track, I asked myself the question – “what types of things did I share on my blog?”, leaving the definition of “thing” rather loose – looking more for patterns than anything else.
This is how I came to the major categories in my theme research – which I then looked at each theme in more depth and drilled down again – looking at subthemes.
The problem I’m challenged with now, is looking at the data and analyzing it as if I were not the person who lived the expressed experience in the first place. I listen to other’s comments on some of my posts and am fascinated by how much they see in my posts – but then I realize what they are seeing is not what I was expressing – nor does it have any meaning for me. It is an attempt at making meaning from the text that is written, when what I’m trying to do is make meaning out of the experience I lived – and I’m not sure those two things align – maybe they do – maybe, I’ll think though it and push through the resistance I’m feeling, and it will all click together – it has happened before!
The sentence that really sticks out is this “it is an attempt at making meaning from the text, rather than making meaning from the experience“. Perhaps, I’m coming back to an impossible question – just like it is impossible to answer “what is my lived-experience”, it may also be impossible for me to make meaning from the text – frankly, I always hated that part of English class, where we attempted to analyze novels and such – attempting to derive some deep meaning from a written text, when each person interprets the text differently (and I didn’t ever really clue in that the goal in school was to figure out what the teacher interpreted from the text, because it was never really my interpretation that was being solicited – but that is an aside).
The question I have now to answer is, where it is that I’m trying to find meaning in this process? My supervisors tell me that I have to not just present the data/results, I also need to explain what those results mean to me – I need to describe the meaning. It is OK for others to see meaning in my text that is different than the meaning I see. When I doubt myself, it is often because I am doubting that I can ever see the same meaning as someone else is seeing – but I am realizing as I type, that I do not need to see the same meaning. That doubt (and impostor syndrome) comes from misunderstanding – it comes from a voice in the back of my head that is telling me that I’m missing the meaning that others see, and that somehow, the meaning that I see is less worthy / less valuable than the meaning that others see – when really, the goal is not to find “the meaning the teacher wants me to find” like back in high school, but rather to find my own meaning in the data. I need to ask what does this data mean to me, and then explain what that meaning is and why I find it meaning that – I don’t need to be deheartened because I don’t see the meaning that others see.
Now, I just need to figure out – what is my meaning – when I find themes and subthemes, I need to ask the question – what does this theme mean to me? Not what does this theme mean in general. However, I need to write it as if I’m answering the question “what does this mean (in general)” – because I’m writing the results of something that is supposed to be some form of “this is what I found, this is what it means” … and the formalized research report format leaves out the “to me” in the way it is written (and hence leads people to believe the data is less biased then it really is) … but that is another issue … so my next step is asking, what does this mean … and being OK if it means less or different things to me then it does to others who are reading my dissertation … because, the goal is my meaning making …
At the BCC annual conference yesterday, one of the speakers, Dr. David Spiegel, mentioned that patients have much less anxiety if they take time at the beginning to make informed treatment decisions. One of the challenges that we run into when we are told we have cancer is the desire / fear / need to do something about it quickly. IMHO, the early detection rhetoric helps increase this need to do something about it quickly. The message we receive is that if you cancer you need to rush into treatment. However, this is not always the best course of action.
Note, that I’m not an oncologist or cancer doctor. There are some cases where that rush is indicated, but in many cases, the cancer does not grow so fast that waiting a week or two will have a dramatic impact. Often you end up waiting that week or two anyways – while you wait for detailed pathology results, various scan results, maybe even genetic test results, and insurance approvals (yes that too is part of the process).
There is a time in that window where patients could do some kind of educational intervention that helps them learn to make more informed decisions, and make decision based upon their personal values, rather than being forced into decision that doctors make for the patient – doctors who often just met the patient and are making decision based upon disease characteristics alone, rather than a combination of disease characteristics and patients longer term life and health goals.
This got me thinking – wouldn’t it be nice to have some form of cancer boot camp – where once you are told you have cancer, while you wait for appointments and test results, that you could do some of that important identity and values work, as well as gain some knowledge about the disease itself, that would help you make better treatment decisions – better decisions that will help you with longer term happiness?
When I talk to other survivors about things they wished they knew and understood, I often here things like – I wish I understood that I had choices. I wish I understood that I didn’t need to urgent jump to treatment, that I had even a little bit of time to think through things. I wish I understood some of the true long term impacts of the decisions I was making. I wish I understood some of the side effects better. I wish I understood that sometimes choosing a doctor is about figuring out who you have chemistry with, not necessary who is ‘best rated’.
There are so many different aspects that are address a little in support groups, but a lot that is not. And support groups are often short duration – 90-minutes once a week or once a month. Wouldn’t it be nice if in that crazy time before you have a solid treatment plan, that there was some kind of experience – a mix of educational, emotional, and spiritual – to help you better deal with the diagnosis and make better decisions? Wouldn’t think help you live better with those decisions?
I found myself thinking that this is the type of work I’d like to be doing. I’d like to be helping coach women through that process. One of the challenges is that women rarely make it to support organizations, like BCC, when they are in that state. They usually do exactly what they are told by the first doctor they see because of fear – because the rhetoric says that early detection (and therefore quick treatment) saves lives. They end up in support groups after all that has already happened – after critical decisions have already been made – and after they find themselves struggling to live with those decisions or find themselves wishing they were given more options. But in order to get that education (or boot camp) to happen sooner in the process, the diagnosing physicians need to buy into the need for it. They need to be willing to address the fact that they, the diagnosing physicians, are not necessarily the best person to be making these life altering decisions (their job is to outline options, and provide recommendations, but not make the decisions – they are not the ones who need to live with the decisions). In the new world of medicine, where patients have access to information but also to each other through support groups and social media platforms, physicians need to learn ways to ceed control, and support providing patients with the right tools to help the patient make the right decision for the patient – the decision that will lead to longer term acceptance of the situation.
What do you think of the idea of a breast cancer bootcamp for newly diagnosed? Would it be something that could work in an online format? What type of information and what type of reflection activities would you think would be of value? If you have breast cancer, what did you wish you knew before you began treatment?
Many of my readers know that in a previous life – 9 years ago now – my husband and I took 16-months off and road our bikes around the world. It was this adventure where I started to blog seriously for the first time. It is also where the domain name Going East came from – we left from Ottawa and went east until we got back home – hence going east.
In addition to blogging, I also started following blogs. I read them obsessively to help prepare for the trip and during our trip. We had guidebooks and maps for the places we visited, but they were of limited use. Guidebooks were often years out of date and not bicycle touring specific. Maps showed major roads, but not the good roads for cycling. When crossing international borders, we also needed to know what the current visa situation was – something that guidebooks cannot keep up with, and even government websites aren’t always current. We did, however, find that we could following bloggers who were a few weeks ahead of us, following a similar path, and use their experience as a way to help guide us. The information they provided was both bicycle touring specific and current. In addition, we could reach out to those who were a couple weeks ahead of us and ask them specific questions. They often were happy to share their experiences, and if our paths crossed we even met up in person.
It occurred to me that this is very much like academic literature and blogs for breast cancer treatment. The academic literature is well researched, but also years old (it takes years to get published) and only provides the perspective that the scientists/clinicians care about, not the information that patients care about. The academic literature is the ‘guidebook’ for breast cancer. Where breast cancer blogs, and other social media, provide more specific information, and often more current information. They share what the patient is experiencing, often as they are experiencing it. In addition, many breast cancer bloggers are happy to share their experience with anyone who sends them a note. I know that I am. I know that several of the bloggers who I follow were happy to talk to me when I needed it.
My point is that guidebooks and academic literature provided well researched information that is of general interest to a target audience. The cycle tourist and patient experiences are specific audiences that are not the target of guidebooks and academic literature. If you want more current information, and you want more specific information, then blogs (and other social media like Twitter chats and Facebook Groups) can fill that gap. It is not just that social media help provide information and context on what it means to actually live with illness, it is also that they provide more current information and information that is of specific interest to patients.
While I was hiking yesterday I had a thought for a study I’d like to do – or at least research whether anyone else has already done it. Of course, I cannot even think about it until I’m finished with my dissertation research, but I thought I’d write it here so that I don’t forget, but also to see what others thought about it. If anyone has any suggestions on where / how one might get some funding to study this I’d love your suggestions. A grant of some type would give the study some legitimacy, however, at this time I’m not affiliated with anyplace that could do that.
Anyways, more to the point, the study idea. The title would be something like: Comparing online peer-to-peer support with oncology care team support relating to chemotherapy side effects in metastatic breast cancer patients.
Part of what got me thinking about this has been conversations with my friend Lori Wallace. She has metastatic breast cancer (MBC) and is very involved in the patient online communities. When she learns something that might be helpful, she makes a note of it.
When Lori begins a new chemotherapy regime, she looks up her notes and asks others about the side effects. She recently started Xeloda, which has a common side effect of “hand and foot syndrome”, where the skin on the hands and feet get paper thing and dry – the folks at Chemocare describe it as similar to having a sunburn on your hands and feet. One of the suggestions she had learned from her support group was to take 400mg of vitamin E. This is something her oncologist, who is truly amazing, had never heard of. Lori describes it as “It makes a subtle difference, but it HELPS and that’s a big deal. It’s the difference between walking with with painful feet and walking with bloody, raw painful feet. Feet hurt either way, but with Vit E, it’s at least possible to baby the feet a few days, then do normal things and “beat them up” without all ones skin peeling of and bloody fissures.”
Another thing that Lori learned from her support group was that Ritalin could help with the debilitating fatigue she was experiencing. It turns out that her oncologist had heard of it, but that it is not approved for that purpose. As a result, her oncologist could not suggest it. In the end, Lori went to one of her other doctors (palliative care or family medicine) in order to get the prescription.
These are just two examples of the type of information that patients are gleaning from each other through online support groups. It isn’t necessarily that the health care team doesn’t know – more that they are not empowered to share – but also that they don’t always have the time or motivation to seek out ways to reduce some of the sometimes rare side effects of a given chemotherapy regime. Patients on the other hand are motivated to find that information. When you are suffering, you reach out to those who understand and appreciate your pain, and can offer some ideas on how to make your life better.
I want to highlight that this is very different than snake oil type “cures”. This is not people who have no experience with the illness lecturing on what might work – rather it is people that do know exactly what it is like to live with the illness or side effect, and can share the things that make a “subtle” difference that really is the difference between having a good day and having a bad one – and when your days are few, every good one matters.
I also want to highlight that the information received isn’t always useful and in some cases does cause harm. This is part of the balancing act patients of critical and chronic illness need to learn how to navigate.
For a research study, I was thinking of looking at what knowledges MBC patients share in their online support groups, and how that compares to the knowledge they gain from their healthcare teams. I’d also like to contrast that with the information that oncology teams receive from formal healthcare training (e.g. continuing medical education courses and conferences). I want to articulate the role that online support groups play that is beyond providing social support. We know that social support is provided by these groups, but there is also medical information provided. There is also patient empowerment support. There are real suggestions that make a huge difference in quality of life for patients. I’d like to look at this and formalize what is happening within these communities and associate it with the role of ePatients in the future of medical care.
Now, my question for my readers, does this sound like a needed/good study idea? Does anyone have any idea of organizations that might be willing to fund such a study?
I find it odd/annoying when I’m asked to participate in a research study about open practice, then the consent form for the study says that all identifying information will be removed and my contribution will be anonymous. To me this is a huge contradiction. The study is looking at practices that I do in the open, and yet my participation in the study itself is not allowed to be open.
Sure, some participants in the study may want to be anonymous, but as a participant shouldn’t I be the one that makes that choice? If anonymity does not affect the study itself (that is, there is no harm in identification, and no risk that my self-disclosing causes the identification of someone else that doesn’t self-disclose), then I should be given the choice. It should not be required that I not be identified.
The internet and participation in open practices is making this issue more poignant. I want to shout out to all IRBs and researchers: Your research participants should be given the choice of how they are identified in your research. You may actually be doing more harm by not identifying your participants – as you are taking their words and ideas and melding them into your research and not attributing them to the participants themselves. If there is no harm to other research participants, there is no reason to require that I not be identified.
So, yes, I’m happy to participate in the study, but I am the one that gets to choose how my words are attributed.
In a post-truth world, I find it rather ironic that I’m studying the lack of a single narrative relating to the patient experience of breast cancer.
We think of science has having a single truth – big t Truth. The laws of the universe behave in a particular way. However, the human body is complex and each is unique. Each person experiences the world in a different way. We each have our own sense of truth – that is little t truth. It is that little t truth that I’m studying.
My research looks at my experience with breast cancer treatment. A lot of people don’t realize that the science around breast cancer treatment doesn’t result in a single treatment option. There are choices at almost every stage of treatment. The doctors don’t know what will work and what wont. If you speak to multiple doctors you often get conflicting answers. This makes the patient experience that much more challenging. Add to it that each phase of treatment is handled by a different doctor (breast surgeon, plastic surgeon, medical oncologist, radiation oncology – and that doesn’t include the doctors that treat side effects of treatment – sleep doctor, dermatologist, endocrinologist, physiatrist, psychologist, primary care … the list doesn’t seem to ever end).
My point is the entire process is complex. There is no single answer to the question. There is no single experience. There is no Truth in this study. There is only my experience, and my view. Sharing my experience and my view helps other patients who are going through similar experiences. Their experiences won’t be the same as mine, but there will be some commonalities. They will need to make some of the same decisions. Their choices may be different, but the things they need to decide are the same. So my experience, and my articulation of how I came to my decisions can be a valuable to others.
The other point of value, I believe, is in the sharing of how I coped with various mental and physical side effects of treatment. Some of these insights and coping strategies may be of use to others.
And so, it is interesting that in a world where Truth is being questioned as if it were truth, I’m studying truth not Truth …
As I mentioned in my previous post, I’m reading Freire’s Pedagogy of the Oppressed. So far, I’ve only managed the first chapter (as well as all the front matter). The first chapter has been a bit of a challenge – but I did find that after a while the ideas and concepts were repeating themselves, with slightly different nuances. I am finding that as I read, I compare to the US election, the US anti-immigration/anti-refugee/anti-muslim rhetoric, as well as my context as a patient (which doesn’t’ really compare from a hate perspective, but the themes of objectification still happen – patients become their diseases).
“It is only the oppressed who, freeing themselves, can free their oppressors” (Freire, 2000, p. 56)
“the former oppressors do not feel liberated. On the contrary, they genuinely consider themselves to be oppressed” (Freire, 2000, p.57)
“certain members of the oppressor class join the oppressed in their struggle for liberation…they cease to be exploiters or indifferent spectators or simply the heirs of exploitation and move to the side of the exploited, they almost always bring with them the marks of their origin: their prejudices and their deformations, which include a lack of confidence in the people’s ability to think, to want, and to know” (Freire, 2000, p.60)
My key take aways:
Oppressors dehumanize people and think of them as “things” rather than human beings.
The oppressed need to be the ones who break the cycle
The oppressors, when things are equal, feel as if they are oppressed
The oppressors struggle with feeling that the oppressed are competent
One of the reflections I had while reading was questioning why I feel uncomfortable with the idea of even asking my care providers (physicians specifically) permission to use their real names / identities in my research. I struggle with even asking them if they want to be a more active “part” of my research, proofreading my interpretations of events and perhaps clarifying their own intentions in the process. A friend mentioned that she was collaborating on research with her surgeon – and I found that to be a very uncomfortable idea. I find that I worry that asking for collaboration puts me at risk of losing healthcare – of being fired by my doctors – and that is definitely a sign of oppressor/oppressed relationship. The funny thing is that I have no issue asking any of the nurses or other allied health professionals (e.g. physical therapists).
I find that when it comes to healthcare, I’m putting the doctors on a pedestal, and reinforcing the power relationships. This might just give me the courage I need to ask the question – in the non-clinical context. The care providers that play an active role in my story are almost all clinical professors and a such also have non-clinical email addresses. I find that I think of myself, a PhD Candidate, as somehow inferior to the MDs who are providing my healthcare. The reality is that they have a different set of expertise. I have my own expertise, and it is just as valuable as their expertise. Only, I really do have to submit my life to their hands when it comes to my care (especially the case with surgeons). What is especially odd here, is that I have in some ways collaborated with their research, providing blood samples for their experiments, but also providing pictures of my body, which they used in publication about the type of surgery I had. So I felt OK helping them in their research, and yet I feel uncomfortable asking them to help in mine.
An Aside: Another book that I finished reading on this trip is: Spare Parts: Four Undocumented Teenagers, One Ugly Robot, and the Battle for the American Dream by Joshua Davis. It is the true story of a robotics team from an impoverished school district in Phoenix Arizona. The setting was rather appropriate for where we are now – as I sit writing this post from the Arizona dessert just south of Why Arizona – where there are signs indicating that human smuggling is illegal. Anyway, this book does a really good job of humanizing the children of illegal Mexican immigrants. The children go to the same schools, and are raised as American rather than Mexican. And yet, if they want to become “legal” they need to go back to Mexico – a place that their parents fled when they were very young – so they have no context of Mexico, nor anyplace to live or call home there. If found that as I read the book, I understood better the rhetoric of what is happening here. Anyways, I really wanted to share the book, as it is very well written and a great story. As we drove past an immigration checkpoint (well within the borders of Arizona), we reflected on how we didn’t have any ID beyond our California drivers licenses. However, we also reflected that we are white, and as result, it isn’t going to be an issue. That is a sad truth.
Back to the healthcare question – would you feel comfortable asking your doctors to participate in your research? Why or why not?
Maha Bali’s latest blog post on Unpacking terms around equity, power and privilege has got me thinking (actually, I was thinking about it just yesterday, but her post has prompted me to write more about it!). I’m slowly making my way through Freire’s Pedagogy of the Oppressed.
“But their perception of themselves as oppressed is impaired by their submission in the reality of oppression” (p. 45)
I’m trying to put this all in context to my research – looking at my lived experience as a breast cancer patient. I am struggling with some of the language. Is what patients experience oppression or is it simply a power imbalance – which doesn’t necessarily mean oppression? But then Freire has me asking myself if my perception is impairing my ability to see the reality?
Is it oppression when the end goal is caregiving rather than profit making? The purpose of the healthcare system is to care for patients, although there is certainly a level of profit making that is at play. In the US, there are a lot of times when your insurance affects your treatment options. Insurance companies seem to be the ones holding the power here, rather than medical professionals. In that essence, it is both the physicians / care providers and the patients who are in the subservient /oppressed role.
“the oppressed, who have adapted to the structures of domination in which they are immersed, and have become resigned to it, are inhibited from waging the struggle for freedom so long as they feel incapable of running the risks it requires” (p. 47).
As a patient, there is a risk of me rocking the boat too much. If you complain too loudly in the US system, you run the risk of being fired by your healthcare providers. That being said, if your healthcare providers suck too much, you often have the ability to change providers. If the ACA (Affordable Care Act otherwise known as Obamacare) gets revoked, then there is a huge risk of the patients who are the worse off already, being unable to get insurance. This adds a layer to the disempowerment of patients. In Canada, what I’ve seen in this situation, is that the patient just loses access to care completely. If you complain loudly enough, doctors stop seeing you – and you don’t always have options (especially if you are located in a rural setting).
Another place where I personally see struggle is around wait times. In the US, I am privileged to have good insurance. This means that I have easy access to healthcare. In many cases, the wait times are short. I’ve come to the expectation that I get responses from my care team within 48-hours of sending in an email requires. That type of response is unheard of in Canada (frankly, so is emailing care providers!). If I need to wait a couple months for a procedure or specialist appointment, I find myself complaining – but the reality it, my privilege in the US means that I have access that far exceeds what I’d get in Canada.
Canada has a much more equitable system, but it suffers from huge wait times. In Canada, the only privilege I carry is that I’m educated enough to ask questions. I’m able to figure out aspects of the system that others cannot, and yet I’m still placed in the queue just like everyone else. My privilege does not buy my way to the front of the line, but it does give me the information I need to ask the necessary questions to ensure that I’m waiting in the shortest line.
And so, I’m in the position of having adapted to the structures of domination, and I know a fair bit about how to play the games I need to play to get things done. With that, I’m hesitant to want to rock the boat, for fear that it would impact my personal healthcare.
“Any situation in which ‘A’ objectively exploits ‘B’ or hinders his or her pursuit of self-affirmation as a responsible person is one of oppression” (p. 55)
So this goes right back to my original question. When I’m looking at the patient experience within the healthcare systems, is that one of oppression? The system is intended do provide care, not exploitation. There are definitely power imbalances within the system, but does a power imbalance mean oppression? What do you think?
I’ve previously talked about researchers using blogs as data sources in their research. I have argued that since blogs are self-publication, then bloggers should be cited appropriately in research reports.
When data is collected specifically for research purposes, we talk about primary data collection. When data is collected for a different purpose, but then later used for research purposes, we call that secondary use of data. Secondary use of data generally requires approval from research ethics boards to ensure that the data was originally collected in an ethical manner, and that the secondary use of data does not put research participants in any form of harm.
The rules of engagement around blogging stem from whether or not the blog text is seen as a publication that is publicly available. Further, when it is seen as its own genre, then can a blog be used as a publication would or does it become a data source that would require secondary use of data approval? If the blog is a data source that is used by researchers, the data can be seen as having been generated for a different purpose, and as such, the researcher should then be required to seek secondary use of data approval. In most cases, this then requires that the researcher get permission from the data owner (in this case the blogger) for use of the blog data within their research study.
In addition, I’ve seen research that confuses the blogger with a research participant, or in the case of health blogs, as a patient. In the case where the researcher is using public blog data without interaction with the blogger, then the blogger should be considered neither a research participant, nor a patient. The blogger, in this case, is a published author. The blog, is a publication, and should be cited appropriately in research reports.
So, should the use of ‘blogs as data’ for research purposes require secondary use of data approval?
Digital Health Literacy – “the ability to seek, find, understand, and appraise health information from electronic sources and apply the knowledge gained to addressing or solving a health problem” (Norman & Skinner, 2008, para. 6).
Critical Digital Health Literacy – the ability to seek, find, understand, and appraise health information from electronic sources to not only apply the knowledge gained addressing or solving a health problem, but also to participate in the healthcare system.
Aligning with the discussion I just finished on Open Dissertations, I have decided to share a half-baked (draft) idea with you. One might say that this blog post belongs in the land of not-yetness :-). I welcome discussion and feedback – and reference for articles/books I should read. I use the term healthcare provider to mean any healthcare professional, including doctors, nurses, therapists, etc.
Digital health literacy has been defined as “the ability to seek, find, understand, and appraise health information from electronic sources and apply the knowledge gained to addressing or solving a health problem” (Norman & Skinner, 2008, para. 6). I want to explore this further, as I feel that the definition is not complete. It touches on the technical aspects of digital health literacy, but misses the contextual issues and social issues associated with developing a new literacy. It also doesn’t address patients’ participation in the generation and dissemination of health related knowledge.
“The questions that have mostly been asked by agencies attempting to introduce literacy to societies where it is not been widespread, have generally stemmed from emphasis on the technical problems of acquisition and how these can be overcome.” (Street, 1995, p.28).
“By definition, literacy is being transferred from a different culture, so that those receiving it will be more conscious of the nature and power of that culture then of the near technical aspects of reading and writing.” (Street, 1995, p.30)
Street’s (1995) description highlights a challenge in Norman & Skinner’s (2008) definition of digital health literacy, as the focus is on the technical acquisition of knowledge as is defined by health professionals. However, those that are receiving this health information are not from the dominant culture – where the dominant culture can be seen as the language of healthcare professionals. So, the problem of digital health literacy from a patient perspective is in the application of health information into the specific context of that patient, where the context includes medical condition but also the country and the culture of the patient and healthcare provider.
“In many situations it is the dominant group within a society that is responsible for spreading literacy to other members of the society into subcultures within it” (Street, 1995, p.30)
We see this in healthcare education. It is healthcare professionals (dominant group) who are responsible for educating the patients. Street (1995) highlights that literacy is not just a learning of new skills but also involves “profound changes in people sense of identity and then what they took to be the basis of knowledge” (p.31). In the context of critical health literacy, the patient identity and role shift from a passive patient who follows doctors orders, to a patient who works with their healthcare team to come up with treatment plans that work for that individual patient. Health literacy involves a shift in power, but not a total shift, from healthcare provider to patient, allowing the patient to take some control over their healthcare.
When it comes to digital sources, the definition of what is considered useful or valid is from the perspective of the dominant group – the healthcare provider. However, many patients also value information that comes directly from other patients, rather than information that is pushed down from healthcare providers. Patients are the experts in their own lived experience, however, lived experience information is not valued by many healthcare professions unless the patient is also a healthcare professional. For example, when a medical doctor who gets cancer then blogs about their patient experience with cancer, their blog is seen with a much higher regard than a blog by someone who is not a healthcare professional. However, that doctor doesn’t experience the patient role the same way patients who are not doctors experience the patient role. Again, we have someone who is in the dominant culture being given more credibility and yet their experience is not representative of the experience for those who are not in the dominant group.
I feel like what I’m trying to do here is to provide validation for the sharing of patient voices in the language that patients understand. The goal is not upward communication, that is, the goal is not to allow patients to better communicate with their healthcare providers, rather the goal is to help patients better understand their experience using language that they understand. We see in patient blogs the adoption of medical terminology. Patient bloggers do not make up a completely new language, rather, the language use is a mixing of the medical terminology with the non-medical language that is used by everyday people. So the focus is on peer-to-peer ways of communicating.
My argument is that one of the goals of critical digital health literacy is about giving voice to patient narratives for the purpose of helping patients better understand their lived experiences. I say one of the goals because I agree that a goal is to improve patient-healthcare provider communication, but I also want to add to it that there is also an aspect of patient-patient communication that is just as important or maybe even more important for those dealing with chronic or critical illness.
Aligning with the goal of critical theory, there is a social justice cause in critical digital health literacy. This literacy helps to highlight the problems with the traditional methods of medicine where the doctor is see as the expert and the patient is in a subservient role as someone who healthcare is performed on rather than with. In traditional models the patient is a passive receiver of healthcare, rather than someone who takes an active role in their personal healthcare. Part of developing a critical digital health literacy is to help patients gain the knowledge and skills they need to find their own voice within their own healthcare. There is also a goal to help those patients who wish to advocate for change, the knowledge and skills necessary to do that advocacy work.
On this front, my personal social justice activity was to create a course called Should I blog? (available at shouldiblog.org). When I created it, I had no thoughts of critical digital health literacy or what role the course might play in such thing. Now, I can see that it is a small part of what is needed to help patients find their voices, but also help patients find other patients so that they don’t feel so alone.
In my literature review for my research I came across a great article (Keating & Rains, 2015) on the social support health (illness) bloggers receive. The article does a good job looking at social support of bloggers over a three year period.
One of the things that came clear in the article is the use of the term health blog rather than the term illness blog. It has really got me thinking. A lot of bloggers shy away from the term illness blog because of the negative connotation around it. My immediate thought was the opposite of illness blog is wellness blog, but the term wellness blog is already used for those who are promoting wellness (e.g. diets, exercise routines, etc). Although the health (illness) blogs are written by someone who is experiencing illness, the focus of the blog is often the personal journey – and that journey is someone trying to figure out what health looks like for themselves. I do like the more positive connotation that health blog implies.
I pulled out the following findings from the article:
“The results indicated that changes in support available from blog readers and from family and friends over the course of 3 years were significant predictors of changes in bloggers’ well-being. Increased support availability from bloggers’ family and friends was associated with a decrease in bloggers’ feelings of loneliness and an increase in their feelings of health self-efficacy” (Keating & Rains, 2015, p.1454)
The article makes mention of the idea of strong-ties and weak-ties. Strong-ties would be those with close family and friends. These are the people you can call anytime. They are your primary support. Weak-ties are those of acquaintances. They are not necessarily your close friends, but they still provide support through your experience. In this case, bloggers often have weak-ties with other bloggers. These weak-ties also help in increasing the feeling of support and decrease feelings of loneliness. I think we need both.
“The results also demonstrate the benefits of blog reader support and suggest that this type of support can serve as a unique resource about and beyond strong ties. After we controlled for changes in support available from family and friends, change in blog reader support was associated with decreased health-related uncertainty. Bloggers who reported an increase in support from blog readers across the two measurement periods also felt that their health condition was less unpredictable” (Keating & Rains, 2015, p. 1454)
What really resonated with me here is the idea that reading blogs helped to make my experience with breast cancer treatment less unpredictable. I was able to read a lot about people who had experienced the same surgery and breast reconstruction – so I better understood what my experience might be like. You cannot fully predict your experience as each journey is individual, but it really does help to have some general ideas of what you might experience as well as some tips on how to better cope.
“In addition, the findings suggested that bloggers who perceived themselves as being in better health at the first time point were less likely to continue blogging over an extended period of time. It could be the case that those who evaluated themselves as being in better health were less likely to perceive value in continuing to document their experiences” (Keating & Rains, 2015, p. 1455)
The idea that we blog less when we are healthy is something that I’ve definitely seen and experienced. We often feel like when things are going right we have nothing to say. A blog post that says “today was normal” does not feel that interesting, and yet, it is an important thing to say. It is really important to celebrate the good days, so that the blog is also providing encouragement to other patients. When cancer bloggers stop blogging we assume one of two things (1) they are healthy and don’t think they have anything interesting to say, or (2) they have died.
“Through connecting authors with individuals who are coping or have coped with a similar condition, blogs appear to be a particularly useful resource for helping individuals to better understand their illness experiences” (Keating & Rains, 2015, p.1455)
As a blogger, and one who reads blogs, I completely agree. Reading other blogs did help me better understand my experience. Overall, I did find that this particular study aligned with my experience as someone who both authored and followed breast cancer blogs. Now I just need to get into the habit of using the term health blogger rather than illness blogger.
Reference
Keating, D. M., & Rains, S. A. (2015). Health Blogging and Social Support: A 3-Year Panel Study. Journal of Health Communication, 20(12), 1449-1457. doi:10.1080/10810730.2015.1033119
This post is a follow up on my post The ethical use of twitter and blogs in research as well as the series of blogs posts on the ways in which breast cancer blogs are being used in research. Today I want to talk about a specific example of what I see as a problematic use of illness blogs as research data. Blogs are used as data in a variety of fields of study; however, most are not as problematic in their use as those in health related fields of study.
The particular study that I was looking at this time is:
Weber, K. M., & Solomon, D. H. (2008). Locating relationship and communication issues among stressors associated with breast cancer. Health Communications, 23(6), 548-559. doi:10.1080/10410230802465233
The first red flag in the article appeared early on when it talked about the ethics approval for the study itself. The authors state:
“After we received institutional review board approval, we collected accounts from various breast cancer message boards, weblogs, and chat rooms, and we conducted a theme analysis focused on the sources of distress voiced by contributors” (Weber & Solomon, 2008, p. 550).
It may be related to the age of the article, but today, a lot of the social media sites (e.g. message boards and chat rooms) explicitly state that the information provided is not to be used for research purposes. The act of “collecting accounts” means that the information collected was not necessarily available to the public. As such, the participants in the message boards and chat rooms specifically, had an expectation of some level of privacy. If the researchers did not seek explicit permission to use the conversations, they were unethical in the manner in which they collected the data. Of course, I can see this through the lens of social media in 2017. It is hard to think of what the researcher lens would have been in 2006/7 when they were conducting the study.
The next problematic area is:
“Quotes in the pages that follow use pseudonyms to maintain the anonymity of contributors, per institutional review board protocol … all quoted material is reproduced exactly as written, and grammatical and spelling errors were not corrected” (Weber & Solomon, 2008, p. 551).
In this requirement for pseudonyms and anonymity, the institutional review board has required that the researchers cite their data in a way that is inconsistent with current guidelines. It is with blogs that I see the biggest problem. Bloggers have chosen to share their stories in a self-published public format. Not attributing their words most likely does not align with the desire of the blogger. If the text had been composed into a book format, i.e. a pathography, then then researcher would have a clear method for citing the quotation. Since the text is a blog, the ethics boards seems to be confusing the ideas of participant privacy with public citations.
I recall being told that the rule of thumb for anonymity of participants is that the participant should not be able to be identified using basic journalistic tools. In the case of internet sources, this means that I shouldn’t be able to identify the anonymized participant through a simple search. I tried this with a few of the quotes in the paper. This one specifically:
“The ultrasound technician’s face told me it wasn’t routine… I waited a tense hour, then came back to pick up the screens and report. I walked back to my car, willing myself not to open it, to give myself another five minutes where I didn’t know. (24)” (from Weber & Solomon, 2008, p.553 – however, the actual source is a blog post written by Alunta Thornton on Tuesday June 8, 2004).
I want to highlight that bloggers have chosen to share their stories in public spaces. Blogs are publications. When you use a public data source for your research, you are expected to cite it appropriately. But for some reason, the health sciences fields specifically, feel the need to take away the identifying information. My belief is that research ethics boards (REB or IRB) in the health related fields have a heightened concern for research participant anonymity, and with that they have lost sight of public versus private data.
I read this article with mixed emotions. I found myself asking whether or not the research project itself was done in an ethical manner? And if it is not done in an ethical manner, then should I dismiss the findings? Should I be careful not to reference it?
The other question I find myself asking is, at what point in time should blogs be considered self-publications, rather than data on the internet? If it is 10 years old, does that mean it is OK that the researchers and research ethics boards didn’t understand how blogs should be used ethically in research? Is it just a matter of a lack of familiarity with the media? And frankly, in 2017, why am I still running into this issue? Why do health science / medical ethics boards today have so much trouble with allowing people to chose to NOT be anonymous in research?
One of the first steps (I don’t have a linear process so there isn’t really one first step) in my research is to tag all my blog posts. I didn’t really use the tagging feature when I wrote the original posts. So now, I’m re-reading and tagging highlighting which posts provide insight into my experience with health literacy – but also key things within my story. I’m also cleaning up the post categories.
I’m not cleaning up the text itself. I’m leaving in all the typos and errors. It is difficult to leave the early posts this way – the later posts have a lot few typos as I gave my husband edit access at some point and he fixed them.
I don’t want to change the post content in any way, as that would be corrupting the data that I’m using for my research. I also think it wouldn’t be a reflection of what I was feeling at the time. The blog gives me insight into my thought processes back then. It is interesting to see how I repeated myself across posts, in part because I didn’t remember what I had already written. There are memories that I had forgotten about. Nightmares that I only now vaguely remember having read the blog post.
What I also can feel as I read the posts is the emotions I was going through at the time. I carried a lot of fear. I carried that fear for a long time. I can see it my posts. I can feel it as I read through it, but only in a soft way. A lot of the fears I had back then don’t carry the same weight with me now. I’ve come to terms with what I’m facing, and I understand it a lot better. I am not living every day with a blanket of fear.
And so with that cheery thought – I’m going to go do some reading of literature and perhaps dive some more into dissertation work, because any other news today is too darn depressing to watch.
This is my second post in a series on the ways in which Researcher’s are using breast cancer blogs. You can read more about this in my initial post. In this post I explore researchers with first author last names starting with D through G. Note that I may have missed a few in my initial search. When I’m done with the list I have now, I’ll go back and search a couple other databases to ensure I’m not missing anything.
de Boer, M., & Slatman, J. (2014). Blogging and breast cancer: Narrating one’s life, body and self on the Internet. Women’s Studies International Forum, 44, 17-25. doi:10.1016/j.wsif.2014.02.014
This study, published in a Women’s Studies journal, highlights some of the unique characteristics blogs contribute to narrative – that is, the authors highlight ways in which blogs can be used to communicate that is different from more traditional narrative forms. Specifically, they highlight “[in traditional forms] there can only be an absence of telling and speaking an anti-narrative. Our analysis shows that blogs offer the paradoxical possibility to narrate the anti-narrative by telling what cannot be told through the posting of an empty story” (p. 20), they also highlight that blogs “allow these women to articulate their experience in their own, sometimes surprising, unconventional and fragmentized linguistic and visual way” (p.21).
I’m a bit challenged by the way in which the authors chose to identify the bloggers. They used the bloggers self-chosen names, however, they did not provide a link to the blogs anywhere in the article. So the blogs themselves were not appropriately cited. The authors do footnote that the quotes and blog titles were translated from their original Dutch language to English.
Denecke, K., Tsytsarau, M., Palpanas, T., & Brosowski, M. (2009). Topic-related Sentiment Analysis for Discovering Contradicting Opinions in Weblogs. Retrieved from http://eprints.biblio.unitn.it/1644/1/037.pdf
In this computer science (or information systems) study the authors are looking at designing a web analysis engine to explore the difference of opinions within communities as time progresses. The study uses the breast cancer blogosphere as a convenient “community” for analysis, but is not specifically studying breast cancer blogs.
Finer, B. S. (2016). The Rhetoric of Previving: Blogging the Breast Cancer Gene. Rhetoric Review, 35(2), 176-188. doi:10.1080/07350198.2016.1142855
This study is in the field of communication studies, and more specifically in rhetoric. I, honestly, don’t understand a lot of it as it is rather theoretical and not my field of study. I was, however, impressed at how the author thanks the bloggers in her footnotes, stating “I will forever be appreciative to the BRCA+ bloggers who have educated me, inspired me, and supported me as a write, a patient, and an activist” (p.187). I am left wondering if it was her insider status that made her see the appropriateness of thanking the bloggers who provided data for her research study?
Gualtieri, L., & Akhtar, F. (2013). Cancer patient blogs: How patients, clinicians, and researchers learn from rich narratives of illness. Proceedings from ITI 2013 35th International Conference on Information Technology Interfaces, Cavtat, Croatia.
In reading about this information systems study, I found myself wanting to use the tool the author is proposing. The author is suggesting the need for a search engine that allows user to find useful / appropriate information from ePatient blogs. Breast cancer blogs are used as a data source to help test the prototype. I thought this was a particularly fascinating use of illness blogs by researchers, and certainly not a use that I had considered. The thought is that if such a tool existed, then ePatient blogs could be more useful as data sources for both research but also for physician and patient education.
That brings me to the end of the letter G. So far I’m really enjoying my exploration. When I started this little project I had expected to find things in oncology, nursing, and communication studies – perhaps feminist studies. I was fascinated to find the ones in computer sciences/informations systems. I’ve found others too, which I will write more about when I get to those letters.
One of my biggest learnings of the phenomenology conference I attended this week (#IHSRC35) was some sense-making around interpretive research. My interpretation of all this was that one of the reasons we share our structured/analyzed/rigorous interpretations of phenomena is so that others can learn from our interpretations. Not learning in the sense of a transmission of our life lessons / experiences onto the learner, but rather learning that happens internally when you hear someone else’s story, and make personal meaning from it. Why I hear someone else’s story, I do not learn the same lessons they learned. Rather, I see aspects of myself and my experience in their story and that in turn helps me better understand myself.
In one of the sessions I attended, the researcher presented an interpretation of what she learned by reading a series of illness blogs. She read her paper (a common practice in some academic fields), which consistent of an academic analysis of the lived experiences that were articulated in the blogs, peppered with a few powerful direct quotes from blogs, and a lot of references to academic literature to support her interpretation. After her presentation the audience asked a lot of questions (as did the researcher) about why these women (the blogs were about IVF) chose to share their stories, and more specifically chose to share so many intimate details from their stories on the public internet. They just could not grasp why someone would knowingly, and intentionally share such a private experience in such a public forum.
I was explaining to someone how odd I felt during that conversation. I was like a fly on the wall, except I wasn’t. Early in the Q&A (which runs sort of like a discussion as many people add commentary rather than questions), I shared that I was an illness blogger. Many people in that room had been to my discussion the day before when I openly identified as both a blogger and a breast cancer survivor. However, I do not think they realized that I was one of the people who chose to share intimate details about my treatment experience – many details that others find much too private to share – in a vary public space.
I began my contribution to the discussion by sharing this quote from Arthur Frank about why those with critical illness chose to tell their stories:
Stories have to repair the damage that illness has done to the ill person sense of where she is in life, and where she maybe going. (Frank, 2013, p. 53)
In hindsight, I wish I had found these quotes sooner – as I did try to summarize when I felt like people were not getting it – that it is in part a postmodern response to becoming a “number” in a medical system where the patient is reduced to an illness and a patient chart. I summarize this in more depth on my post about autopathography.
What occurred to me only after the fact (while talking to someone at dinner) was that in many ways bloggers do what they do for the same reasons that phenomenologists or any other interpretivist researcher does what they do. In sharing of their experiences, there is a hope that others will be able to learn from those experiences. We know the learning isn’t necessarily (or even usually) about the specifics of disease treatment. As someone experiencing critical illness I know that my experience is unique – however, there are aspects of my experience that can help others better appreciate what it means (in my case) to be a breast cancer survivor. The readers of my blog will not interpret my blog the same way I do. They will take what of I have written and someway or another place it into their own context. They will make a part of my experience and incorporating into a part of their own. They will experience my story in a way that only they can experience it.
Part of what keeps bloggers writing is our inherent desire (or need) to write, but there is also something else that keeps us writing. Every time someone leaves a comment or sends us an email with a note of encouragement, that keeps us writing. I’ve received countless notes, some very personal, recounting how my blog has helped someone understand themselves or a loved one. Each one of those messages feeds me to continue. This is in a way similar to how many (not all) researchers hope that they are contributing to the furthering of knowledge/understanding – or furthering to the greater understanding of phenomena. There is a parallel between what bloggers do and what researchers do. We are all contributing to human knowledge in one way or another.
As I mentioned in my previous post, I’m doing a systematic review of how researchers are using breast cancer blogs. I’ve narrowed the focus to breast cancer blogs because that is the focus for my dissertation. It also helps to keep the dataset manageable, as a lot of review and filtering is needed to remove all the false positive hits from the literature search. Unfortunately “blog” and “cancer” are terms that appear in a lot of articles that have nothing to do with blogging or cancer. Anyways, the purpose of this post is to highlight some of the studies that do use breast cancer blogs as a data source, outlining the ways in which researchers are using the public blogosphere in their research. In addition to breast cancer blog related posts, I’m finding some interesting other things while reading, so I’ll highlight them as well.
Anderson, A. G. (2014). Cancer bloggers’ styles of humor while coping with cancer. Master of Arts. Masters Thesis, University of Texas at Austin, Austin Texas.
In this communication studies research, Anderson analyses several different blogs for the ways in which humor is used to help cope with cancer. Her ethics board deemed the research “not human subject researcher” because the researchers is using only publicly available blogs for her research. She does directly quote blogs and appropriately references them as if they were any other publication. One thing I find interesting though, is that she uses the term “one blogger” rather than the name of the person. For example:
One blogger, who was nearing the end of treatment for breast cancer, recapped her weekend with her readers and talked about how she is beginning to see more ups than downs in her days. She began by giving the example that she was able to go to her daughter’s ballet recital at her school. She wrote:
The first graders did a beautiful performance and they combined a few things they had learned form their Chinese teacher. There was the expected dragon dance and a ribbon dance (which one parent misconstrued from his lisping daughter and was disappointed that it wasn’t ‘River Dance.) But you haven’t lived until you have seen an entire first grade class do the ‘hokey pokey’ in Chinese. I have and I did. (Griffin, 2010)
(Anderson, 2014, p.50)
If the blog had been a research article, instead of saying “one blogger” the researcher would have said Griffin (2010), who was …
This is one example of communication studies research. I am discovering that it is not uncommon to use breast cancer blogs as a source of data for communication studies research.
Bock, S. (2013). Staying Positive: Women’s illness narratives and the stigmatized vernacular. Health, Culture and Society, 5(1). doi:10.5195/hcs.2013.125
Similar to Anderson (2014), Bock (2013) also used publicly available illness blogs as a data source for their research. The research is grounded in folklore studies. The research was broader than breast cancer blogs, looking at women’s illness blogs in general. As such, the bloggers directly quoted where in the fibromyalgia blogosphere. For the analysis of breast cancer blogs, Bock quoted other researchers in the area. This study is another example of how blogs are being used to study rhetoric.
Clarke, J., & van Amerom, G. (2008). A comparison of blogs by depressed men and women. Issues in Mental Health Nursing, 29(3), 243-264. doi:10.1080/01612840701869403
I highlighted this study not because it related to breast cancer blogs, but rather because they make a clear statement about how they approached the ethical use of blogs in their study.
The ethical issues regarding the use of Internet for social research are still ambiguous. Some argue that Internet statements are essentially public (Brownlow & O’Dell, 2002; Jones, Zahl, & Huws, 2001). Others think of them as private and confidential. We take the first position because we consider the blogs used to be public. Moreover, we were impressed by the statements made by a number of bloggers about the efficacy and education benefits they felt resulted from their blogging. One example follows: “are you slogging to advocate for increased political will, stronger social and medical strategies, and, About all, greater public understanding in Canada and around the world.” In addition, we did not include any blogs that were copyrighted or that required passwords. We did not interact with any bloggers but simply downloaded and printed the blog content on two specified days. To ensure that those whose blogs used to have complete anonymity we have changed select words including all proper names, some pronouns, verb tenses, in similar words And phrases. We have done this so that it would be impossible to locate any blogs from our data. This strategy actually provides several layers of protection to the bloggers. Not only is it impossible to locate the bloggers in the blogosphere from this data it also is, therefore, if possible to identify the individual blogger as real persons. In addition, we have protected the anonymity of bloggers by changing all names and by not referencing the blog address used in this study. The Ethics chair at our university expressed no reservations about publishing the analysis, given the protection provided to the bloggers.
(p.249-250).
What I found particularly interesting here is the comment about not including blogs that have been copyrighted. I actually don’t really get this. I suppose that because they changed any of the direct quotes, they cannot republish them because they changed them. For me this doesn’t mean you cannot use in your analysis, but perhaps you might want to avoid in the reports. I don’t know.
The idea of anonymity of the blogger is something that is quite prevalent within the healthcare related fields. Previously, I reflected on how illness blogs make what is intensely private very public, and how this might prove to provide a particular cognitive dissonance for those in health professions fields. This might explain the authors desire to protect the identity of the bloggers, but I’m still a little confused about not including copyrighted blogs in the analysis. I do applaud the authors for writing a very clear statement on how they approached ethics of using illness blogs.
That brings me to the end of the letter C unless I uncover more as I read through the rest of the articles in my list. So far, I’ve found the reading to be rather interesting.
Do you have any questions? What do you think about the use of blogs for rhetoric analysis? Should they be used as a convenient data sample?
Feature image: Wellcome Library, London. Wellcome Images images@wellcome.ac.uk http://wellcomeimages.org Mastectomy and relevant surgical instruments A general system of surgury in three parts… Lorenz Heister Published: 1748 Copyrighted work available under Creative Commons Attribution only licence CC BY 4.0 http://creativecommons.org/licenses/by/4.0/
I’m working on a systematic literature review based upon researchers that use breast cancer blogs. This particular review was inspired by a comment written by Caroline on my blog post about the Usage guidelines for researchers who use blogs. In the comment Caroline mentions that “I would never have thought my blog could be used in research.” This has inspired me to look at how researchers are using breast cancer blogs, so that I could better highlight the different uses of the data. On June 16, 2016 I did a Google Scholar search for articles that mention “breast cancer” and mention “blog” or “weblog”. I listed the results from the first 20 pages of articles in a spreadsheet. I’m wading through them now alphabetically. Many are false positive hits (e.g. the articles don’t mention breast cancer blogs in any way). There are, however, some very interesting articles and I’ll be posting some of my reflections on the articles as I go through them. I’m particularly intrigued by the variety of fields of study that use breast cancer blogs in their research (e.g. feminist studies, communication, public health, nursing, computer science). I’m also interested in the different approaches to the ethics used in by the different fields of study.
I was further inspired by a comment left by JF on my post about citing versus anonymizing blogs, where she highlights the importance of recognizing the labor that goes into writing blogs. I think this is a point I feel the need to emphasize. In many cases there is a space in the publication to acknowledge and thank people who helped with the article. Often researchers use this to acknowledge those who provided peer reviews or other academic guidance in the research. For students or new career scholars they recognize the guidance of their supervisors. I have yet to see an article (I’m going through alphabetically and I’m only on D, so there is hope yet) where the researcher acknowledges the work of the bloggers. To researchers, public blogs are seen as a free data source that they can use for their research. They seem to miss that this “free” data source is the result of 1000s of hours of labor on the part of the bloggers they are studying. They should at least add a “thank you to the bloggers who contributed their lived experiences that provided a source of data for this study”.
And so, I put this out there for anyone who uses any of my blogs for research purposes. I don’t feel the need for you to necessarily ask my permission, as I am posting publicly. I do, however, ask that you in some way acknowledge that the “free” data source you are using is the result of many hours of my time. I give to you willingly my experiences, all I ask is that you say thank-you.
There are two aspects to the conversation that I want to talk about – the idea of public versus private, and the idea of vulnerable populations.
Some research is exempt from REB review where protections are available by other means. This Policy allows the following exemptions from the requirement for REB review, as outlined below.
Article 2.2 Research that relies exclusively on publicly available information does not require REB review when
the information is legally accessible to the public and appropriately protected by law; or
the information is publicly accessible and there is no reasonable expectation of privacy.
Direct quote (from Canadian TriCouncil Ethics Policy).
Part of the challenge with illness blogs is that they tend to make what is traditionally very private information (individual health information) very public. This crossing of boundaries causes a lot of cognitive dissonance, especially in the health related research spaces. Physicians and health professionals are taught to keep patient data in utmost confidence. This is also the case with researchers. Researchers are typically taught to protect research participant data. We are taught that we must protect the confidentiality of research participants. The challenge comes when the patients/participants don’t want their data to be kept confidential. When they chose to self share information in very public spaces, the health care community and the research community suffer from a form of cognitive dissonance. They have what they see as very private data being found in very public spaces, but their training and their view on what is moral and ethical don’t allow them to share private data, even when that data is already shared publicly.
When I asked the question about blogs being used for research purposes, some people thought the answer was simple – sure, the data is publicly available it should be OK with using it. What I struggled with was why I felt that to be an easy statement to make in the Educational Blog space but a difficult one in the breast cancer blog space. As an educational blogger I have no trouble with people using my blog for research purposes or quoting me in research as long as they attribute the quote to me. But the types of things I write about in my educational blog are typically not health related issues. They are typically things that are safe for ‘public’ conversations. The breast cancer blog is a different story. I want to know if researchers are using my blog. I want to know how they are using it and why they are using it. I also want to make sure that if they quote me the attribute that quote to me. I’ve chose to make what is very private a public conversation. That was my choice.
In their assessment of the acceptable threshold of minimal risk, REBs have special ethical obligations to individuals or groups whose situation or circumstances make them vulnerable in the context of a specific research project, and to those who live with relatively high levels of risk on a daily basis. Their inclusion in research should not exacerbate their vulnerability (see Article 4.7).
Direct quote (from Canadian TriCouncil Ethics Policy).
But why do I feel that it is fundamentally different to study the edu blogosphere than to study the breast cancer blogosphere? One of my committee members brought up the idea that perhaps the people involved in my study would be considered ‘a vulnerable population’. I actually don’t really see it. I’m studying the breast cancer blogosphere. Yes, some of the people who might participate in my study might be from ‘a vulnerable population’, but my study does not put them in a vulnerable place. However, I am studying with the context of a caring community, and I think the nature of a caring community is fundamentally different than the nature of an educational community. The Edu blogosphere is about sharing knowledge and making connections with other educators. We might make connections and become friends, but that does not make the edu blogosphere a caring community. The potential for caring within a community does not make it a caring community. The breast cancer blogosphere is largely about providing support for those who live with or care for someone living with breast cancer. Blogging through treatment is largely about providing a method of self-care as well as maintaining a connection to those who provide care (e.g. family and friends). So the community is fundamentally different, and I do think that somehow matters from a moral perspective, if not an ethical one.
Do I think the breast cancer blogosphere is a public space? Yes I do. I think it is intentionally a public space. I think a lot of bloggers share their story publicly because they want their story to be heard. It is a form of testimony to the experiences they are having. Those who read blogs serve as witnesses to the experience. There are a lot of private spaces for people to blog (e.g. Caringbridge), such that those who want to write a journal and only share with their loved ones do not need to publish to a public space. So there is no expectation of privacy for anyone who is blogging, even if the topic is private.
There is also the issue within research of maintaining a reasonable expectation of privacy among research participants. I had this debate with a lot of researchers (and a friend studying ethics at that). The challenge comes when the research participant does not want to be anonymous. When they have chose to make the private public, they may very well want their participation or the role acknowledged in the research. This is a challenge when acknowledging one person leads to disclosure of others – in that scenario you cannot acknowledge the one because you are putting the other at risk of being identified. Makes sense to me. But when that isn’t the case, then it makes sense to identify those who wish to be identified – or to allow them to chose their alias in the study reports. In the case of bloggers who are blogging publicly, if you agree that their blogs are a public act, and you wish to direct quote them then you are obligated to cite that quotation appropriately. If you don’t wish to identify any of your research participants, and they are bloggers, then you cannot direct quote them. You can only paraphrase what they say. This of course causes challenges with rigor – because you are now interpreting what they are saying without providing any direct evidence of what they said, and you are restating what they said likely without a way to validate that you interpreted it correctly. But that is kind of how interpretivist research works – all researchers are providing their interpretation of what they are studying. The only way to provide that proof is to direct quote, which in turn provides a means to directly identify the research participants. You see, a simple Google search or the direct quote will usually point you directly to the blog post in question. Direct quotes from blogs are inherently identifiable. BTW – this is true for tweets too. Tweets can be searched and identified.
OK, so I have come back to the beginning. Yes, I do believe that public blogs (i.e. those without any form of password protection) are public spaces. I see the challenge when people are choosing to make the private public, as they do in the case of breast cancer blogs. Because breast cancer blogs are not just an educational community (community of inquiry), rather they are also a caring community. I do see an added need to think of them as more than just the text/blog, but rather to remember that there is a human being behind the text. It just feels different, and that difference needs to be honored in some way. I don’t think making breast cancer bloggers anonymous in research is appropriate. I think taking away the voice they tried so hard to reclaim through their blogs is a form of oppression. In the context of my study, I don’t think those participating in the breast cancer blogosphere are vulnerable populations in the way that the Canadian TriCouncil defines a vulnerable population. There is no material benefit from choosing to participate or choosing to not participate in my study. There is no way that my study furthers to oppress an oppressed population. So I fail to see that link.
Ok, this post turned into a much longer musing than I intended it to. The big idea really happened at the beginning of this post – when I saw the connection between the private / public – and the way in which I believe it causes cognitive dissonance for health providers and researchers.
Do you think that there is a difference between studying a caring community versus another type of community? How does studying the breast cancer blogosphere differ from studying the edu blogosphere? How does that difference change our moral and ethical obligations?
I’m thinking of calling out to the blogging community (more specifically to the cancer blogging community – but I’m sure this extends to other blogospheres), in trying to create some way to signify to researchers how the blogger wants their blog to be used in research. I’m thinking something similar to what creative-commons has done for the copyright community, I’d like to create something that is “informed consent” for the blogger community. Bloggers would then make the official statement in their About Me page. This would give researchers an indication for how the blogger wants their content used in research.
Some of the statements might include:
When and how to reach the blogger (e.g. email, leave a comment, no need to contact)
What types of research I approve (e.g. all research, medical research, social media analysis, etc)
What uses of the blog are allowed (e.g. analysis use without prior permission, analysis only with prior permission)
What level of interaction does the blogger want with researcher (e.g. participatory research only, member checking required to ensure correct interpretation, no involvement in the research)
How should my blog be represented in the research reports (e.g. quote me directly, don’t quote me, anonymous contributions only)
What follow-up the blogger would like (e.g. contact me with research results)
Those are a few things that immediately come to mind. I’m sure there are a bunch more. In the next week or so, I’ll look at how best to reach out to the larger blogging community to get their ideas on what this statement could say – then I can look at the best ways of categorizing things.
Let me back and up start with the backstory on this. I’m looking at illness blogs in my research (more specifically the learning that occurs in breast cancer blogs). In doing so, I’m combing through the literature for anything written about illness blogs (or illness web logs, pathography, etc). As I read, I find myself a little frustrated that the far majority of researchers are both not bloggers and do not have critical illness. They are trying to be ethical in their methods, but they don’t have enough information to do so. They make assumptions based upon their field of study. What is ethical varies by field of study. For example, in social media analysis studies, anything on the public internet is fair game and does not require permission to use. So any blog that is not password protected, and any twitter chat is fair game for researchers. No approvals, no contact. In some circles it is common to use this public information logic as a reason to not need approval, but then remove names from quotes citing privacy. However, when I talk about researching blogs and ask if blogs represent “human subject research” I’m told yes, it-depends, or no depending on who I ask. If yes, then the bloggers in question need to give informed consent before their blogs can be used for research. I’m not sure happens if the blogger is dead (it happens when you research illness blogs). Then there is the issue of how best to contact the blogger. In some circles it is seen that if the blogger does not include an email address on their About page or in their footer, then they do not wish to be contacted. Anyone who blogs knows that the comments are how you typically reach a blogger – and especially if you are blogging about a health related issue and don’t wish to have your real name associated with your blog.
My point is, the topic isn’t that straight forward. Researchers are well meaning, but they are making assumptions about what is ethical and what is moral based upon their specific fields of study. The voice of the blogger doesn’t play into the decision about how the blog is used in research. I want to change that. I want the blogger to be able to give official informed consent (or inform of their choices/preferences) directly in the About page of the blog. This will be especially useful in legacy blogs where the blogger has died and can no longer be contact to gain consent.
Not exactly sure how to go about this, but I think it is something that is really important. I think that the blogger’s voice needs to be heard in the research space. I think that each individual blogger should have a say in how their blogs are used. I don’t think researchers should be deciding on what is ethical or moral, I think that is something the blogger should decide.
What do you think? Do we need a blogger code for researchers? How would you go about making that happen?
I started this question multiple times over the last couple days. Since not everyone is on Facebook or in the areas of Facebook where I had this discussion, I figured I’d start the conversation again here – hoping that people will jump in here with their thoughtful comments, questions, and suggestions.
I will start by saying there is no one ‘correct’ or ‘right’ answer to this. It just isn’t that simple. I can see multiple sides and multiple perspectives. It is in part why I feel the need to grapple with the idea a little more before deciding what I think, but also figuring out what aspects I want to really defend.
My intention for my dissertation research is to use some form of open data collection. This may mean using data that is currently in the open, or it may mean using a blog as a way to collect data. The exact mechanism of this is not certain. I’m not 100% why I’m committed to this idea, but I kind of am. In part because I think it is an important discussion to be having, and an important next evolution in doing research in digital spaces. It is in part a mixing of the idea of doing data on open data sources (so what is available in the public) and doing participatory research.
I am studying the learning that occurs in reading, writing, or participating in the breast cancer blogosphere. It is a rather vague and broad question. I think it is important for a variety of reasons. One of which is because I think peer learning has a direct impact on healthcare in situations of critical illness. I also think that the affect that peer learning does have (and the place of blogs) is poorly understood (and not considered legitimate) within the healthcare community. As a result, patients are often told to “not use the internet” when they are diagnosed with critical illness (such as breast cancer), when the internet may be exactly where they need to go to learn what questions to ask their doctors and to gain a better understanding of their disease and help them make important decisions about their treatment. The healthcare system doesn’t have the resources to educate every patient to the level that they need to be educated. In addition, healthcare providers who have never experienced the illness don’t necessarily know some of the things that patients might want to know – they may dismiss them as unimportant, where a patient may actually think it very important. Lived experience and peer learning have their place. Anyways, that is not the point of this post, this is about ethics and data collection …
Here are some of the rules: (1) if data is already publicly accessible (no password protected sites) on the Internet, then it is considered in the ‘public’, (2) information in the public can be used in research without the need for IRB (institutional review board, also known as research ethics board) approval. Based upon this, publicly accessible blogs are in the public and researching what is on the blogs (and comments) does not require IRB approval.
One of the ways IRB is required is based upon whether or not the research is deemed ‘human subjects research’. The problem is, ‘human subjects research’ is open to an awful lot of interpretation. In most cases an anonymous survey does not require IRB approval – it is waived as exempt because no personally identifiable information is collected (typically).
There are emerging protocols on how to manage research data that is collected on the internet. Again, anonymous surveys are typically pretty easy. You put in a simple informed consent page at the beginning and you are done. Analyzing data that is publicly available on the internet is also pretty straight forward (although there are questions about ethical attributions when studying blogs and other online communities – that is a discussion for different blog post).
Where things are getting murky is open data collection as an insider within the community. As a blogger, I can ask any question I want on my blog. I’m doing it now. I own my space on the internet. You can chose whether or not you read it, and whether or not you reply to me personally or publicly. If you reply publicly and I publish it on my blog, it is now information in the ‘public’. This does not pose a problem when I am asking a question for interest sake. It does pose a potential problem if I ask a question for the explicit intent of doing academic research. Why? Because the IRB can say that I cannot solicit data without first getting IRB approval.
When I’m an outsider to the community it is pretty easy to hold back. You just avoid asking the question until the study has received approval. It is more challenging within the blogging community. Part of the authenticity of the community itself is that ability to ask questions whenever they arise. It feels dishonest to my readers, but also dishonest to myself, to hold back on the question while waiting for IRB approval. Truth be told, I can almost never hold back on blogging my ideas. But it also feels unethical to ask questions that I would normally ask knowing that I might want to use the answers to that question within research. Or even more to ask question because I know I want to use them in my research.
One might just say, no big deal just apply for IRB approval. However, applying for IRB approval at my institution is a big deal. It is horribly time consuming. It requires submitting multiple printed versions of the 30+ page form. When not required it is both a waste of my time and a waste of the time of everyone involved in the IRB process. Oh ya, and they only accept applications the first three working days of the month, and they take July off – so not only time consuming from a getting the application together perspective, but also time consuming from a calendar / research delay perspective. In addition, the logical processes mean that consent forms and such need to be in a specific format which eases the approval process but IMHO can make the process that much more cumbersome for participants. Frankly, I sadly see it as more red tape than making my research more ethical.
So, I’m stuck again on what is ethical and how do I move forward with insider research within a care community (the breast cancer blogosphere). On one side I’m told that if I use what is currently publicly available, I don’t need to get IRB approval. But what if that information is publicly available because I already asked the question. For example, when I created the course “Should I blog“, I asked other cancer bloggers to answer the question “why they blog”. Rather than telling me why, I asked them to write a blog post about it. Another question I asked them was “where do you draw the line?” – that is, what do you chose to share and not share? I used this information to help create the course. Now, as it turns out, that information is of potential value to my research question. Those posts, which I solicited for a different purpose may now be of research interest. Since my motives were not for research, this might be deemed “secondary use of data” which is much easier IRB process, but also it could easily be argued that the data already exists in the public.
But if I ask the question now … then is that question being asked for the purposes of my research? The nature of the blogosphere is that any question that I ask (both here and on my other blogs) is likely to ripple through the blogosphere, with other bloggers picking up and replying to it. All that information will end up ‘in the public’ – so in the open. But the act of asking for it, is really soliciting data for research purposes, and therefore should be subjected to IRB approval.
So I’m back to the question / moral dilemma of soliciting feedback for research purposes from within a community that I already have an established relationship.
What are your thoughts? Does / should blog solicitation of data (e.g. interviews / focus groups that happen in the publicly accessible/open blogosphere) be subject to the same ethical guidelines as interviews / focus groups that happen within closed face-to-face research? Does the nature of the researcher as an insider in the community change your answer?
Footnote for the sake of transparency: Any response to this inquiry may be used in the preparation and presentation of academic articles/dissertation chapters and/or conference presentations.
I don’t know if it just me, but I find myself REALLY annoyed when research study social media communities and don’t both to tell the communities about the research. I understand that researchers may not want to affect the phenomenon they are studying. But once the study is finished and findings are published, I think it is basic courtesy to at least inform the community about the publication.
Some of the most vibrant and interesting social media communities are those whose common thread is illness or healthcare practice. I find myself beyond annoyed when I find that someone has quoted a blogger in their academic paper and then find out the blogger being quoted doesn’t know about it. This isn’t the old days, when informing an author of a quote was difficult. It doesn’t take much to click “comment” and leave a thank-you note, or send a quick email to the author, or a tweet to the twitter community.
As an insider in some of the communities being studied, I find myself beyond annoyed. There is a risk that I might even be quoted in a research study and not know about it. Worse yet is the practice of taking away the attribution when quoting tweets. If you are going to quote or use my tweet as an example, I expect that you attribute it to me. Ugg.
OK, rant over.
I’ve decided that anytime I come across a blog quote for a blogger that I follow, or a tweet for a blogging community that I have participated in, that I will inform the community of the research study and make available (if I can) the research paper to anyone in the community who might want to read it. As the “participant” in a study, it is my right to be informed about the results of the research that I am participating in. Even if consent is not required – the quotes are on publicly available websites or twitter – there is still courtesy.
What do you think? Should those who study social media communities be required to inform the community of the research results?
In the process of preparing my ethics proposal I need to review the literature related to illness blogs. I am finding that because a lot of women with breast cancer write blogs, largely because it is one of the biggest and most accessible illness blogospheres (blogging communities). This means that a lot of researchers, when they are searching for a representative model, chose to study breast cancer blogs. This also happens with the #bcsm hashtag on twitter – as it is one of the longest standing and most active illness-based social media communities. Interestingly, I’m finding articles from a variety of different fields of study (although none of them education) including: nursing (most are here), oncology, communications, journalism, and social media (sociology or anthropology).
One of the challenges I’m running into when I read the articles is that they are written by researchers looking into the community. They are written by outsiders. Not just outsiders to the breast cancer community, but often the people writing the articles are outsiders to the blogging community. I go to look them up and they have no web presence.
I struggle with the emotional strings associated with the reading. They draw on quotes from breast cancer blogs to prove an academic point, but I find that I understand so many of the nuances behind the quotes that I feel the research is superficial. It often does an analysis of a single aspect of what is happening, but that aspect is happening in a context, and often that context matters. I also feel the emotional pull because I can completely relate to what quoted blogger is saying. I wrote a little bit about this on my post about my emotional reaction to reading about narrative analysis that uses a breast cancer pathography as an example.
I struggle because the researchers are often missing the point behind blogging itself. It is often very clear from the articles that they don’t really understand the phenomenon they are studying.
I struggle with the ethical challenges in the publication of bloggers quotes (often very lengthy block quotes) in academic journals. I am happy to see that for the most part the bloggers are credited directly for their words – in that they are references exactly as the blogger choses to be identified in their blog’s About page. What I wonder about is that if the academics are not bloggers themselves, do they notify the bloggers that their posts are being used? In academic spaces, the currency of appreciation is in the citation. That is, academics know that their work is having an impact when their articles are cited by other academics. In the world of the blogosphere, the equivalent currency of recognition is a pingback and/or a tweet with a mention. However, if the academics are not participating in the space they are studying (e.g. any form of blogosphere), they have no way of knowing the currency of the participants, and no way of indicating their appreciation for the work through an appropriate currency. Citing my blog does not help me academically (it isn’t considered a publication, and therefore is not considered a citation), and citing my blog URL in the reference list does not improve my site’s statistics (hit count, etc). There also is no way for me to know that my blog was quoted. I see this as a particularly large problem when the academic is drawing on a large amount of block quotes to prove their academic point. In some ways it feels a little like exploitation if the blogger in question is not notified. Now, in some cases the blogger may very well be notified (although this is in no way required by ethics), but that is also not communicated within the article. Perhaps we need to start using a footnote within the article to inform the readers that the blogger being quoted was notified of it (permission is not needed as public blogs are in the public domain).
On a side note, for anyone who is quoting blogs or other websites, you might want to take a look at The Way Back Machine. You can put the URLs you are quoting directly into the Way Back Machine to ensure that the posts are archived – and then you can retrieve them based upon the archival date if you need them (too bad APA dropped the retrieve from date!).
Since I have yet to see some insider research within this space (there must be some, I just haven’t come across any yet), it occurred to me that this is an important thing that I bring to the table with my research. I’m an insider. I can appreciate the nuances of both what is being said in the blogs, but also how to ethically and responsibly do research within this community.
Do you do insider research? How do you feel when someone else who is an outsider writes about you?
What do you think about the ethics / courtesies relating to quoting bloggers in academic articles?
One of the challenges my committee has given me is to describe how I view learning (Step 1 – Motivation). I began my exploration by doing some preliminary research (Step 2 – Research – actually, in many ways this was a reminder of the many years I’ve spent studying different learning theories! I wrote a post about it back in 2011). I then moved on to brainstorming my ideas of how I conceptualized learning (Step 3 – Reflect). In order to better understand my conceptualization, I needed to articulate it which I’m attempting to do in this blog post (Step 4 – Articulate). And finally, I need to have some conversation/dialog about my ideas in order to help me develop a deeper understanding, but also to ensure that I’m on the right path (Step 5 – Conversation).
A funny thing happened. I wrote up a description of learning in a Google doc for my proposal. That is what I was originally going to share here. Then, when I wrote the first draft of the paragraph above I had one of those “ah-ha” moments. I could use what I just described as a conceptual framework for my dissertation study. I went back to the drawing board (literally, back to brainstorming) to see if I could fit what I had said into a framework for learning. That caused me to add a couple more steps (my initial version only had three steps).
Here is my current thought on how I would describe learning (and really, what interests me most when I ask the research question “What learning occurs when people read, write, or comment on breast cancer blogs?”
I consider learning a complex topic. From a learning theory perspective, I believe that no one learning theory describes all the ways in which we learn. I also believe that there is no way to select and combine learning theories to gain a complete picture of what learning is. In this way, I describe myself as learning theory agnostic. I do not believe we will ever completely understand how learning occurs. In this way learning is a complex topic, with no single lens through which to view it.
I consider learning to be expressed both externally by changing the way we behave, and internally by changing the way we think and the way we feel. Some forms of learning are cognitive in nature (e.g. learning facts about the disease or specific details of a medical procedure). Some forms of learning occur when we experience something, but also when someone who has experienced something shares that experience. In addition, other forms of learning are socially negotiated and are therefore deepened through conversations and reflection.
Now I’m asking myself, what theories of learning are a play when looking at learning that occurs in blogs? as these are the learning theories that will inform my research study. I can use my five step process (which could be part of a conceptual framework) as a starting point, but also wonder about overarching theories of learning that are also at play.
Looking at the step-by-step component, I have:
Step 1 – Motivation. The question that this step asks is “What brought you to reading/writing/commenting on a blog?”. The learning theory that best fits this phase for me is self-determined learning, also known as heutagogy (Hase & Kenyon, 2007), were “heutagogy is concerned with learner-centered learning that sees the learner as the major agent in their own learning, which occurs as a result of personal experiences” (p. 112).
Step 2 – Research. Since I am specifically interested in the learning that occurs through blogs, I’m most interested in the ways in which people might use blogs to support the “research” phase of learning. The learning theory that immediately interests me here is paragogy. According to Corneli & Danoff (2011), paragogy is “the critical study and practice of peer learning”. However, this makes the assumption that those who are doing the learning are peers. One might argue that what might apply more is some form of informal or unstructured learning.
Step 3 – Reflective Learning. For me this is where transformation often occurs. It is almost always when the “ah-ha” happens, and usually seems to come on while I’m exercising or in the shower! … I think this is in part where my model starts to fall apart.
I realize now that I’ve spent too much time trying to make this fit into the model – where the model does not fit. This is in part because I also need to look at “who’s learning am I wanting to study?”. I was looking at lens that was based upon the perspective I take when I go to write a blog post – more specifically, when I go to write an academic blog post. This is not necessarily the lens I take when I read blogs – especially when I read breast cancer blogs. In trying to use this as a framework I’ve been trying to solve the wrong problem.
Of course, then there are all the overarching learning theories which are also at play in this study. These include (but are likely not limited to): connectivism (Seimens), complexity theory (Davis & Sumara), scaffolding (Bruner), socio-constructivism (Vygotsky), experiential learning (Kolb), double-loop learning …
There are probably 1000 more niche learning theories that could be applied to this study. Perhaps that is part of my problem. It isn’t that I don’t know enough about learning theory, in some ways I may know too much. Or perhaps it is that I know just enough to make me dangerous. And my interest in the subject is great enough that I can easily get derailed into reading about obscure learning theories.
My next thought is to perhaps to to prioritize. What are the top learning theories that I think will best describe how learning might be happening in breast cancer blogs?
(1) heutagogy and with it a link to complexity theory
(2) socio-constructivism and the social nature of learning
(3) connectivism
Now I wonder if I should be looking at things from a different angle. Perhaps I should look at some key learning theories – let’s say complexity theory, socio-constructivism, and connectivism and see what of those principles might be applied to learning that occurs in breast cancer blogs?
Part of me feels the need to take everything I’ve just written and crumple it up in a big ball and toss it in the recycle bin – hoping that a new idea comes of it after supper!
What do you think? How do you describe learning? Are their better/different ways in which I could name the different lenses?
If there is enough interest in the topic, I’d also be happy to host a Google Hangout on Air discussion (perhaps using the Virtually Connecting model/platform).
Last week Stephen Downes wrote a post about research – about how research often focuses on what is and not on what ought to be.
For me, this links directly to the idea of axiology – what we value in research. It has me asking the question about what I value in research. When I originally wrote about it, I was very pragmatic. I valued research that affected real change in the world. I wanted research that had direct ties to practice, and I wanted my research to have an impact. Here is what I wrote back then:
For me, value in research translates directly to an effect on practice. I will see my research as successful if it changes the way people teach or learn (for the better). For me, I will see my research as successful when I see that others are citing it in their research or using it in their practice.
That isn’t so much the case now.
My new research project will look at the impact illness blogging has on those who read the blogs. It is an exploration, rather than an intervention. I’m not seeking to change the practice of illness blogging, rather, I’m seeking to delve deeper into better understanding the function that illness blogging plays on the people who read the blogs – but I’m also looking to tell my story. I want to integrate my story into my research. I want to see how my specific illness blog reflects the different things that people are learning from blogs. In some ways, I’m seeking validation for the work I did writing through my cancer treatment.
The presentation I did for the Queens University of Belfast conference on ePatient blogging and microblogging is an example of the story I want to tell. It is a short 20-minute presentation based upon a survey that I did while I was on medical leave. The presentation was titled “Cancer Blogging – A Survivor’s Story“. What struck me in the telling of the story was that all the questions that were asked of me after the presentation were about my story. The people listening to the presentation were less interested in the results of my survey – rather, they wanted to know more about my story.
So now when I ask myself the question what do I value in research?, the answer is the narrative. I value the story that the research is trying to tell. I want my research to tell a story that others want to read. I hope that the research process itself helps me better understand the important parts of the story – as what is important to me is not necessarily what is important to others. Perhaps that is what I’m trying to discover with my research – what parts of the illness narrative are the important parts? What are the parts that other people learn the most from? What are the parts of the narrative that matter the most to other people?
It is interesting to see just how different my values are today. It is interesting to see how my axiology has changed.
What do you value in research? Has your view of what is valuable in research changed over time?
How do you describe what a blog is? There is the technical definition, which describes the various characteristics of a special type of dynamic website. We could go back to the root of the word web + log = blog.
We could look at a blog as a form of self-publication or self-broadcast. A blog is a personal space or place for the author on the internet.
But there is more too it than that. A blog is not just about a place for the author to broadcast, it is also a place for conversation. To be a blogger is to be a part of a community of the bloggers. Different types of blogs have different cultures. The blog-o-sphere isn’t one thing. It is not something that can simply be identified.
Going back to yesterday’s post, the author started with “Society has changed“. I would argue that society is change. By its nature, it is not a static thing. It is something that is forever moving. In the same way a blog is not simply a website. It also is not one thing. It cannot be defined in the static, because by its vary nature it is change.
We could think of a blog as a living thing. Something that is fed – primarily by the blog author – but also by those who choose to comment. Those who engage in conversation also feed the blog, encouraging the author to continue.
I have a challenge ahead of me. I want to blog as dissertation. I want to blog as data collection. But before I can do that, I need to define what a blog is. I need to define it for the lay person who is note familiar with technology. I also need to define it for my community. I need to define it for an external examiner. I need to someone make static the dynamic and living thing that is a blog.
And so, I ask my readers, how do you define a blog? What are the ‘things’ that make a blog a blog, rather than a website or a personal public journal? What makes a blog a unique digital media?
I’m preparing to teach in January. I just got a copy of the course textbook, and I’ve been reading through it. I came across this paragraph, and has a visceral reaction to it:
Society has changed. In the past it was the norm for families to join together around a dinner table and talk about the events of the day. People read newspapers and watched or listened to news broadcasts from professional journalists. These journalists gathered information from trusted sources, then shared the information with the masses. Now it is the responsibility of the individual to determine what information is correct. Now families who want to learn what members of the household are doing check status updates, posts, or send texts. As reflected upon by Dr. Jason Ohler, the days of the dining room discussion has gone away and now dining rooms have been changed to “gathering spaces” (Ohler, 2014). ~(Ribble, 2014, p.12)
I’m reading this while having a background conversation about how the victors write the history books. The discussion sparked because of a blog post written by my friend Maha Bali – where she talks about the importance of writing multiple versions of history, but also the importance of hearing those multiple versions.
I wonder in how many ways the sample paragraph above is wrong? In how many ways could it be rewritten to demonstrate the difference between the past and the current state of technology use within ‘family’ units? How it might also mention that although journalists of the past were seen as ‘experts’ in what they presented, their stories were always biased – and often incorrect. Anyone who has ever been interviewed for an article can tell you just how often professional journalists got the story wrong! And yet, that is seen as a credible source where the living accounts given on blogs are not …
Anyways, I thought I’d share that paragraph and ask my various friends – in what ways is this paragraph wrong? How can I turn this into a ‘teachable moment’?
This post was inspired by the post written by Maha Bali (this morning I her time) – Revisiting Impostor Syndrome. It is rather serendipitous that Maha chose this moment to write about her idea of a website here, as I was reading all about doing ethnographic research on the web and recommendations for creating a research website.
As part of my preparations for going back to school in January, I’m reading the recently released edition of Netnography: Redefined by Robert V Kozinets. I had been overly critical of his earlier book because it was so out of date. However, as I progressed through my PhD studies, I found myself going back to his work for ethical guidance on various projects. And so, I’m reading the new edition of the book in hopes of gleaning a few more ideas around the ethics of doing ethnographic (and perhaps pathographic) research involving internet-based communities.
Interestingly enough, last night I was reading the section on data collection that talked about having an “Interactive Research Website”.
The site provides opportunities to use your research interests to contribute something of value to people. Moreover, these sites are an ethical way to collect transnational and international interactional and social online data by gaining people’s full and informed consent for participation in the research in a fully honest and open way, directly tied to our legitimacy as university professors and students. ~ Kozinets (2015, p. 184)
In some ways, doing impostor syndrome research by storytelling through blog posts might actually be easier done because it is done in the public / open space. The space itself is only open to an extent. Since we are a group of people who span institutions and countries (I guess I technical span institutions and countries myself), the ethics of doing research in non-open forum is complicated. Making things open simplified things, but also silences voices. I think any approach will have its pros and cons. The silencing that might happen because we are telling our stories in the open is a concern. We can address part of that concern by allowing authors to create alternate identities. In many cases, the specific identity of the person isn’t as relevant as the story and the context of the story. However, the context of the story may be traced back to the person. There is also the need (in some cases, not all) to be credited for the work (service) that is being done by sharing the stories.
On the flip side, by telling our stories directly on the internet as a series of blog posts, our message is getting out immediately. We are immediately disseminating our auto-ethnographic data collection. I am reminded here about whether we are trying to write about “lived experience” or “living experience”? In this case, I think it is mostly about “lived experience”. We are re-telling past stories because they are stories that need to be told. There are people who will benefit from hearing our stories.
We would need a really strong policy about the types of comments we do and do not accept. We would want to allow space for conflicting ideas, but not space for personal attacks. In light of gamergate and other stories of women being digitally harassed, we know that personal attacks that can occur. We would need ensure that our policy clearly states that anyone whose comments are perceived as a personal attack on an other will be marked as “spam” and their future comments automatically deleted. This is an extreme approach, but one that I think it really important. It is really easy to allow attacks to take way more mental energy then they deserve.
One of the biggest reasons I’m in favor of the idea of creating a multi-authored blog to support this project is that it is likely the only way we will create something concrete out of our work. I’m not convinced that it is something that would turn into anything publishable in the academic sense, but it is definitely self-publishable. It will also have larger impact as a blog then likely as a book. At a later date, we could always take excerpts from the blog and turn them into an anthology.
I’ve had some experience with multi-authored blogs through Virtually Connecting. I’ve considered spawning others – but have run into the challenge of getting people to commit to writing / providing content. It is easy to say “I like the idea”, and a whole different thing to committing to contributing to the labor that makes it a success. Virtually Connecting works because we have a growing number of people who are willing to continually engage. When things get quiet for too long, we gently nudge it and it continues to grow.
We would some how need to figure out how to do that with our new site. If the 30 or so people who initially signed up committed to writing two posts – which we staggered release of so that we had new content being published on a regular basis, but also so that we were not flooding people with too much in one day. But those logistics take time and energy. Someone needs to coordinate. That role is often largely invisible, and yet crucial to the success of the site. It is something that is so much easier when it is a pet project of one or two people, and a whole different thing when it is intended to be a collaborative effort by many. Are there too many followers and no leaders in the group? How do we recognize the efforts of the leader and logistics folks, as they are likely to be publishing less on the site itself – the time they dedicate to the project is in the background?
I feel the need to clarify my request of a couple of days ago. I’m searching for examples where at least a portion of the formal dissertation was written as a blog. Thanks to some responses, I’ve found examples where people have blogged about their dissertations, but that isn’t exactly the same thing. I’m wondering if anyone has tried to actually do a blog as a dissertation?
When I questioned the idea of Collaborative Autoethnography as a methodology for a formal PhD dissertation, AK pointed out that a dissertation is a form of formal assessment. I had not thought of it in that light. Maha points out (in the comments) that there are some precedents for participatory writing in formal PhD dissertations.
Another great aspect of digital writing that directly impacts the writer is the community and the engagement that results from writing. ~ Rusul AlRubail for #digiwrimo
Part of my vision for my PhD is a participatory exploration of what people who read blogs learn by reading them. More, I want to explore this idea of blogs as more than just a broadcast writing media, but one that gives the authors a voice in a community. Part of me wants to be able to write a portion of my dissertation as a blog – perhaps the results and discussion chapters – allowing for the public, living, discourse that occurs with a blog, that does not occur with the traditional static monograph format of the traditional dissertation. But this gets messy.
There is a sense of complexity to the process that I think needs further exploration. I want to elevate the blog to that of a formal medium for academic discourse. And yet, in doing so, do I lose what the blog is all about? If I elevate it, then does it become just a digital representation of the formal monograph?
Blogs are about the “living experience” rather than the “lived experience”. Has anyone tried to truly integrate this “living” version of a PhD in a formal dissertation?
I have found a dissertation that looks very interesting and may help with my quest to find the appropriate research methodology. It is titled “Blogging Through my Son’s Incarceration: An Autoethnography Exploring Voice and Power in an Online Space” by Tammy S. Bird (2012). I am very curious about how she not only writes but also about the ethical question of sharing someone else’s story in a blog. The title itself screams to me the ethical question of sharing someone else’s story. I’m looking forward to what I might learn from it.
For today’s post I have a request for all my academic friends.
Does anyone know of any dissertation that was done all or in part using a blog as the format?Or any other digital (non-linear, monograph) type format?
I am preparing to go back to school to finish my PhD. What is even more exciting is that my new supervisor is encouraging me to explore blogging as a way to write / disseminate my research. My topic of research will be exploring the learning that occurs as a result of breast cancer blogs. Since the study involves exploring blogs, it makes sense to see if blogging might also provide a means for writing a dissertation. The question is, has this been done before? Has anyone looked into it? What has already been learned?
It actually reminds me of a discussion I had with some folks at the dLRN conference – about theory – but also about the idea in academia of “standing on the shoulders of giants”. I find this need to look at what others have done interesting. Does it matter? Should it matter? The reality is, that if someone else has done this, regardless of their topic/field of study, the processes that they engaged would make it easier for me. I can learn from what they have done. Whoever they are, they might not be giants, but they will be someone who has tried something that might help guide me in the right direction.
And so, with that, I ask all my friends and blog readers – do any of you know of anyone who has attempted to incorporate blogging into their formal dissertation?
In preparation for relaunching into PhD studies, I am working on getting back into the habit of reading academic papers. Over the coming weeks, I hope to be reading more and writing more.
Yesterday’s articles surrounded the very limited literature on the intersection of pathography and blogging. I found three articles: Lent (2009), Elperin (n.d.), and Vaccarella (2012). The short notes version of what I read are: (1) I don’t agree that blogging is a good medium for therapeutic writing unless the person doing the blogging has done reflection on blogging first, (2) pathographies seem to only account for those written in the form of books, there does not seem to be a consideration of blogs as a form of pathography, and (3) I wish I could do visual autopathography, but in reality, that isn’t where my skill set is.
Lent, J. (2009). Journaling Enters the 21st Century: The Use of Therapeutic Blogs in Counseling. Journal of Creativity in Mental Health, 4(1), 67-73. doi:10.1080/15401380802705391
The question that I found myself asking is “how do we differentiate therapeutic journaling from pathography”
Lent (2009) “I suggest that if people have a personal computer and Internet access, blogging could be the next step in the evolution of journal writing.” (p.69).
I found the article itself to be rather naive. Mostly my concern is that of encouraging patients who are vulnerable to write using a medium that makes them more vulnerable. This is a place for a course like Should I blog? Before encouraging anyone to blog, the potential bloggers should be encouraged to reflect on blogging as a practice, and be educated about digital identity and how much to share online. Lent (2009) suggests that blogging is a good tool for therapeutic journalling, but misses the most valuable aspect of blogging, and that is the formation of community that can happen when one truly engages in blogging. Perhaps it is this community aspect that differentiates a blog from an electronic journal?
Elpern (n.d): “As physicians, it is clear to me that doctors spend a lot more time thinking about the disease the patient has than about the man, woman or child who sits or lies across from them.”
Elpern (n.d): “A pathography is a narrative that gives voice and face to the illness experience. It puts the person with the disease in the forefront and, as such, it is an important learning opportunity for all caregivers and fellow sufferers. The Pathography blog, established in 2008, is a repository for these stories.Pathographies provide ways of learning to focus on, and perhaps vicariously understand, a bit of the illness experience from the first person standpoint. Too often, in our medical literature, the voice of the patient is not heard. This blog is a place where I have indexed and described works, mostly books, that touch on diverse aspects of the illness experience.”
The website of pathographies is http://pathography.blogspot.com/. All of the pathographies listed are in the form of books – some self-published, others using traditional publishers. There doesn’t seem to be any mention of blogs as a form of pathography. I worry about how much of the story gets filtered when it is transposed into book format. I also wonder about the stories that don’t get told because only a select few have the skill to write their illness in autopathography book form. I wonder, are illness blogs a digital manifestation of pathography? Is anybody writing about blogs as pathography?
Elpern (n.d.) “While meandering along these lonely, lovely cyber-pathways it struck me how our major medical journals make it well-nigh impossible to publish articles on the human side of medicine.”
I really hope this is changing with the growing field of medical humanities.
Vaccarella, M. (2013). Exploring graphic pathographies in the medical humanities. Medical Humanities, 39(1), 70-71. doi:10.1136/medhum-2012-010209
Vaccarella (2013) “The teaching of visual literacy skills in medical education curricula is still in its infancy” (p. 70).
Vaccarella (2013) “When reconstructing their illness experience in narrative, patients often devise metaphors in an attempt to domesticate trauma and life change. Illness metaphors are frequently rendered in their literal sense ingraphic pathographies.” (p.70).
This is the first article I’ve read on graphic pathographies. The author mentions the added layer of information that is provided by the visual context. It really makes me want to learn how to draw, so that I can tell my story in both pictures and writing. That being said, writing is the skill that I have, not drawing. I’m not sure I could add the additional layers of meaning, in part because I don’t see them when I read a comic. I’m not tuned into the added information that is portrayed using the visual media that are comics.
Vaccarella (2013). “This rewarding initiative signals the need for a more systematic use of graphic storytelling in medical education, especially in the context of international student populations” (p.71)
The idea that graphic pathographies provide a better way to communicate with foreign language speakers is an interesting one.
I have commented previously on how I use different names in different contexts. Rebecca is my formal and professional name. I use Becky with close friends and within the breast cancer community. When attending conferences, I’ve been able to use the name as a signal. People that know me well or read my breast cancer blog will call me Becky, others will call me Rebecca (which is what is on my nametag). Note that although friends in the breast cancer community call me Becky, my healthcare team call me Rebecca – this is in part a safety issue, which I blog about here.
At the conference, I’ll be reporting on a survey that I did that looks very peripherally into the impact breast cancer blogs have on those who read them. I’ll be presenting the information as an auto-ethnographic narrative, in part because when it comes to breast cancer blogging I cannot be objective. The commentary from the surveys illucidate different stories (narratives) within my own lived experience. So my presentation will be in part my story, and in part a report on survey results. This is a whole different type of conference presentation, and I’m excited to be able to give it.
This presentation will challenge my identities. They will clash at this conference. I will attend as Rebecca J. Hogue unaffiliated scholar. I will present as Rebecca J. Hogue, but I will be presenting about my lived experience as BC Becky (stands for Breast Cancer Becky). I have not yet figured out how to be both Rebecca and Becky within the same space. I don’t know who that person is yet.
I had an interesting conversation the other day with a fellow survivor about profile pictures. About how the picture that was used before cancer isn’t a picture of the same person. This is very obvious when you consider hair. Looking at old pictures is a reminder of who I used to be. The hair is a signal that is triggered by old profile pictures. The new has not yet emerged. I’m only part way there. My hair is still stupid short because the first growth after chemo (chemo hair) is not normal hair. I don’t have a new professional profile pictures yet. I don’t know what I want that picture to be yet. I don’t know who the Rebecca J. Hogue + BC Becky person is yet. I’m still a pheonix, emerging from the fire anew. I’m ready to start the re-emergence process, but I’m not at the end of that path yet.
I recently attended the Social Media and Society conference held in Toronto Ontario. During the conference, I saw many different presentations from different academic backgrounds (e.g. sports, media studies, sociology, economics, etc). I was struck by how few people from Education were at the conference, but alas, I digress. I’m writing this post because I want your opinion on an matter of ethics.
There were many people within the conference that did research on twitter. There were even workshops that demonstrated tools that allowed you to capture twitter data and provide some level of contextual analysis on that data. For the most part, I did not see an issue with these studies, but then I did.
I didn’t see a problem when the studies were looking at some phenomenon or another. When they were looking at hashtag trending, or trying to describe how twitter was used as a tool for social change.
Then, a presentation perked my interest. Someone was doing research on #hcsmca (health care social media Canada). I attended the session and was impressed when the presenter immediately said, if you are Tweeting about this session please also use the #hcsmca hashtag – as this community was directly involved in the research (she did in-depth interviews with active members of the community). They (the #hcsmca community) want to know what is being said. Out of respect for the community, the presenter asked that we please include them in the presentation tweets. I found myself nodding. I agreed completely.
Then I attended a session on #BCSM (Breast cancer social media). This session was presented by a high school sophomore. He was doing the research as part of his sophomore project. He presented an amazingly complex analysis of the 100,000+ tweets that he had scraped from the #bcsm hashtag. Throughout the presentation I felt uncomfortable. I even tweeted out about how, in some ways, I felt violated.
Feeling a little violated when considering psychological aspects being analyzed #bcsm#smsociety15 << Issue with research on public spaces
Over the last year I have actively participated in the #bcsm chat. I had never heard of the person doing the presentation (nor had the #bcsm facilitators). I had no idea that someone was scraping our tweets and subjecting them to psychological content analysis.
During the session, I asked the presenter if he had talked to the facilitators of the chat. He said no. He said he was waiting until the paper was finished and was going to give them a copy of the completed study. I wasn’t sure what to say to that, other than to encourage him to talk the facilitators sooner rather than later. But I couldn’t help by feel that something was wrong. Why would he not feel the need to reach out to the facilitators of the chat before conducting the research on the chat?
I recall from a book report that I did on the book Netnography (about doing ethnographic research on the Internet), which talks about consent in an interesting way that has really struck a cord with me. One of my lessons from that book was that although people consented to putting their information on a public forum on the Internet, they did not necessary consent to having that information be included in a research study. This describes exactly how I felt. I felt like my information had been taken for the purpose of research without anyone ever asking me. Worse, that the presenter had absolutely no interest in the actual topic of our community – just that we were a convenient sample in which to draw from. It felt wrong.
Now I wonder, is this an overreaction? How is what he did different than the folks that did the awesome presentation on #blacklivesmatter – or any other hashtag for that matter? I think in part, it is because in the case of #bcsm, what was being studied was a community of care. The community that isn’t actually that large (over the course of a year, there were approximately 80 unique tweeters). The fact that it is a community of care matters. I likely would not have had the same reaction if he had studied the #lrnchat or #phdchat hashtags.
I think that at a minimum, if we are to do ethical research on social media communities, that it behooves us to at least let the community facilitators know, if not the entire community. As participants in the community, we have a right to be informed that our tweets will be included in a research study. The presenter actually included tweets on his slide presentation with names blocked out – as Kozinets‘ points out – entering the tweets into a Google search and you know exactly who said them – again you have a situation where you are presenting something in research where the person did not have an opportunity to consent to be included. One might even argue that women with breast cancer represent a vulnerable population – and as such, a higher standard of care/ethics should need to be met.
I am extra concerned because this high school student is entering into the realm of research without adequate guidance. Not only did his research get praised, he won an award for being the youngest scholar at the conference. Never was there any question of the ethical implications of doing research on a potentially vulnerable twitter community.
So, readers of my blog, what do you think? Am I over-reacting? Please use this poll to vote – Should social media researchers be required to inform communities before researching them? Please feel free to leave a comment. I want to engage in dialogue around this, so that it can be better understood. What are the ethical obligations of anyone wishing to conduct research/analysis on a twitter community of care? Are the obligations different if the community is not care based? (e.g. #lrnchat).
Hi, I’m Rebecca Hogue, and I’m a blogger, a scholar, an educator, and aspiring writer. For the purposes of this presentation, I’m my unaffiliated self.
When I was a PhD student, my bio was pretty standard – “I am pursuing a PhD in Education from the University of Ottawa”. Simple and standard – name, position/rank, and affiliation.
I’m now in a very odd position. I’m a PhD candidate, but I’m on medical leave – so technically I’m not a student. I’m also not currently teaching (although I expect that to change in September). And if I were teaching, it would not be at the same university where I’m doing my PhD studies. The standard name, position, and affiliation doesn’t make sense.
I have intentionally tried to use the term unaffiliated; but some conference organizers were challenged by that. At the latest conference, my unaffiliation became Various. The traditional academic world is challenged by the new breed of academics. Those of us who are trying to eek out a space in a world where tenure track positions are few and far between. In some ways, this desire towards the standard bio of name, position, and affiliation is a way in which the current situation in higher ed is ignored. It also goes to promote the status quo – a system that is need of a shake-up. The academic world is all about prestige, and that prestige comes with the brand that is a university affiliation.
However, the world is changing. I’m a non-traditional student. I’m also someone who is not afraid to rock the boat if I feel like it needs rocking. In the academic world, where more and more people are parttime contract workers – often taking teaching positions at multiple institutions at the same time – the traditional bio just doesn’t make sense. At some point, I might be affiliated with three or more institutions of higher learning – and yet, I would not belong to any one of them. None of them would be an affiliation that I would be obligated to promote. Nor would I want the chains of an affiliation to bind me. There is a form of freedom that comes with being unaffiliated.
The biggest freedom is that of not being bound to research ethics boards. It isn’t that I do unethical research – I am highly aware of the ethics of doing research. I just find that too many ethics boards are self-serving bureaucracies which put in policies to make their own jobs easier while making the actual research less ethical (don’t get me started on consent forms that are written in a manner that only makes sense to ethics boards, and ensure that participants won’t read them – (un)informed consent).
And so, when universities are paying me to teach classes, but not paying me to serve on committees or do research, I am left with choice. I am doing things on my own time, with my own money, I can choose how I wish to spend that time and money. I’m affiliated (but only loosely) with multiple institutions, I have some freedom to choose which I wish to represent – or I can choose to represent my unaffiliated self.
I am still left with the struggle of the bio, and the struggle with how to introduce myself in an academic setting. Over the next few months I have several conference presentations to give, and with each I struggle with how to introduce myself and how to complete the “bio” information for the conference website/proceedings.
Hi, I’m Rebecca Hogue, and I’m a blogger, a scholar, an educator, and aspiring writer. For the purposes of this presentation, I’m my unaffiliated self.
This post was written and originally posted on Maha Bali’s blog, and has been adapted by me for me 🙂
Would you like a peak into the eMOOCs conference (European MOOCs) that starts today?
This is an open invitation to anyone who would be interested in joining this experiment Maha Bali and I are trying out. It’s “virtual conference correspondence” (VC) and it’s a spin-off from the pilot “virtual buddy” (VB) program (details here) we tried at #et4online in April (where I was an onsite participant and brought Maha Bali into the conference via google hangouts. We streamed the meetings with people onsite and we occasionally included other virtual participants in the meetings – you can view the full playlist and storify).
The plan for tomorrow is the following:
At 12:30 Mons time (Belgium, that’s 6:30 am EDT, 11:30am BDT), a group of people onsite will meet Maha and me for a quick hangout. The person helping us organize this is Inge DeWaard who is one of the conference organizers, and hopefully we will include both keynote speakers, Dave Cormier (who will talk about rhizo stuff) and Sian Bayne (who will talk about use of bots in #edcmooc), as well as a co-author of one of the featured conference papers, Whitney Kilgore. The conference this year is flipped, such that some conference material is already available online on Edx in advance of the conference (such as Whitney’s paper on #humanMOOC).
So my hope is that if all the logistics and tech work out, we can have a quick chat with everyone on how this new model of a flipped conference is going, and to also give other virtual people a chance to ask questions to they keynotes or just to watch them as we chat.
Google hangouts take up to 10 people, so between Rebecca (who is unsure her internet connection will be good enough, but fingers crossed!), Inge and myself, and also Aras Bozkurt who expressed interest in joining, we have 6 more spaces. Anyone welcome. Just tweet to Maha @bali_maha or respond to this post and let me know and I’ll invite the first 6 people who ask
I hope this works out well! Thanks to Maha for setting all this up, and to Inge, Dave, Sian and Whitney for agreeing to play with us.
At the #et4online session, I went to both the career sessions – one for ed tech practitioners (e.g. instructional designers and educational developers), and the one on ed tech scholars. Last year, I only went to the scholar session, but I found that they kept referring back to the practitioner session so I wanted to make sure that this year I had context for both. I recall that last year, I left the scholar session a little disillusioned about the career path. I blogged asking Where are the real Ed Tech scholars? in part because all the invited scholars had followed a career path that led them to Ed Tech through something else. They did not choose Ed Tech, Ed Tech choose them.
Part of the reason I go to the career sessions is to get a better sense of the state of Ed Tech careers. I don’t necessarily want to follow in the path of any of the presenters, I just want a sense of what paths are out there.
The first career session I attended was the EdTech as a Practitioner/Leader session. My only criticism of this session is that two of the three presenters were from the same institution (California State University – Channel Islands). I must say, it sounds like an awesome place to work. The challenge I have is that it doesn’t give you enough of a sense of what is out there. The key advice from this session was (1) figure out what your niche is, (2) make a name for yourself, (3) being connected makes a difference – so time spent fostering connections is worthwhile.
The second career session I attended was the EdTech as an Academic. For this session, I was struck by how all the presenters were women. I was also struck by how the advice we were given seem to be “volunteer”. If you volunteer lots, then paid opportunities will find you. Honestly, I really struggle with this advice. In some ways, it is exactly what I’m doing. But as a self-employed person, it is exactly what I’ve been trained to be careful to avoid. If you give too much of yourself away, then people won’t pay for you. There is a tension there that I need to figure out. For example, a Twitter friend commented to me that she only goes to conferences that pay her to attend. As a part-time/adjunct professor, self-funding a conference is an expensive proposition that doesn’t necessarily result in return on investment. I get that. I am just privileged enough to have the luxury to buy my seat at the table – at least while I qualify for the student rates anyways!
My criticism for this session is largely that it seemed that all presenters knew each other through Merlot. They all seem to say the same thing – volunteer for Merlot. I also felt there was a lack of adjuncts presenting. The reality for most people completing a PhD in education today is that we will be doing adjunct work. At the eLearn conference I met a women who was making a good living as an adjunct – she had figured out how to teach well online, and make a decent living from it too – that is what I was hoping to see at the panel. I kind of felt like the panelist were not connect to the state of todays job market.
What was also problematic is that they didn’t really let anyone else talk. These were suppose to be round-table discussion – without hierarchy – and yet each of the presenters seem to feel the need to address the one or two question with long diatribes that are much more conducive to panel discussions. There seem to be a lack of quiet times, that would allow other people to jump into the conversation.I felt that I needed to be a little rude and put my voice forward aggressively to get a question in. My tweet summarizes my option of this session rather well “This is a Merlot stacked session… not enough room for people to ask questions … let there be empty space in the conversation”.
Note that neither the Practitioner nor Academic career sessions were available to virtual participants. I did debate bringing Maha into one of the sessions through #et4buddy, or doing a Google Hangout to bring in some virtual participants but I realized that I really didn’t want the sessions to be recorded in any way. In some ways the sessions are a safe space for asking questions and exploring career issues and options. Recording or live broadcasting would take away that safeness.
Although not specifically a career discussion, the Ed Tech Women: A Conversation panel (#et4women – inspired in part by a blog post I made relating to my experience at the conference last year – Does Ed Tech have a man problem?) involved a fair bit of career discussion. I was struck by how all the women presenting had previous careers in the corporate sector. They had left the corporate sector because they wanted work that was more meaningful. One of my challenges with academia is that it often does not recognize the work that is done in the corporate sector. More specifically, I spent over 15 years working in the corporate sector, and yet a career in academia means I need to start at the bottom. My prior experience is discounted. What the women on the panel did not say, and what I struggle with regularly, is the huge pay cut they took to be in academia. One reason women are drawn to the corporate sector is that it pays so much better than higher education does. One reason women leave the corporate sector is that it doesn’t understand work-life balance (not sure academic is THAT much better – but it is usually a little more time of day flexible).
So there you have it. If I were to do it over again, I would not choose to attend the scholar session. The practitioner session was worthwhile because it was my first chance to connect with Michelle and Michael – two really cool people – and since connecting is perhaps the most important bit of advice, I’m glad I did it 🙂
As I explore more the power of live streaming apps like Meerkat and Periscope, I find myself wondering how this might affect classroom teaching. I don’t see a direct use for the tools in my everyday teaching. I’d rather record a presentation that my students can then playback as many times as they need. I’m also someone who much prefers asynchronous communication for online learning – so that students can approach the learning on their own time, but also so that students have time to think about their responses before they give them.
When using the live streaming apps, I was immediately creeped out by how easy it was to start live streaming from my phone. It just seemed too easy to self-broadcast. I’ve played with the apps a little more, so I’m a bit more used to it. It is amazing how quickly a new technology can go from creepy to normal.
The folks at Norton made a nice info graphic on the safety/security aspect of self-broadcasting live stream data (reproduced with permission):
The one area that I’m not seeing a lot of discussion is around the impact live streaming might have on the privacy of the people being streamed. It is easy enough to control the data that you stream (once you understand what your phone shares), but there is no way to protect against others streaming you. Anytime you walk into a public (or even semi-public) space, there is a risk that you may be live streamed.
Next, what do we think about this technology and the classroom? I encourage my students (in-service teachers) to integrate mobile technologies into their classroom where appropriate. As a teacher, you may come to expect that your students may live stream you on the internet. But as a student, you will not expect that your classmates may live stream you. What does that do for creating a safe learning environment?
In some ways, this technology is no different than technology we have had before. We’ve been able to video anyone and upload that video to YouTube for years. Why does this technology feel so much more invasive?
We mentioned in our post about our #et4buddy pilot project at #et4online that we would be trying out a variety of technologies to support the pilot project. This week two technologies crossed my path: Meerkat (@Appmeerkat) and Periscope (@periscopeco). Both tools are available for free in the Apple App Store and allow you to live stream to the internet directly from your iPhone or iPad.
I started off by experimenting with Meerkat. I was creeped out about it at first – mostly because it streamed live from my phone too easily. I hit a button and suddenly my camera was live streaming. I felt like I did not get enough warning before the camera went live. After streaming for less than 30 seconds I started to gather followers. I was surprised that they were totally random people, rather than the folks that follow me on Twitter. I didn’t leave it on long enough for my friends to find me.
My next experiment was with Periscope. Having learned a little from my Meerkat experience, I went out for a walk before doing my experiment. I really didn’t like the idea of live streaming anything directly from my apartment. I liked that Periscope made it a lot clearer before the streaming started (I had to hit a button that says “Start Broadcast”). Prior to the first broadcast, I got to choose whether or not to enable video, audio, and location services. So, I can stream my video and audio without the need to share my location.
I turned on a broadcast while I was walking, and within about 15 seconds I started to get a few followers. I asked the followers to post a note to me, and a couple of them did. I liked that I could see the notes on the screen easily. I could see the potential of using this as an easy way to broadcast an aspect of the conference while collecting feedback and questions directly from those following along. Unfortunately, within a minute I also picked up a troll, inviting me to “switch cameras so he could see my beautiful face”. This got me to turn off the public broadcast pretty quickly.
I then tried a private broadcast with Maha (@bali_maha). That worked much better – however, I was talking and filming while walking, which made the video rather jumpy (and I was showing the river which came across as nondescript random nature). I learned that for #et4online, I’ll need to move a lot slower and allow my audience some time to “see” what is on the screen before I move around. I shouldn’t assume that those viewing the video can make sense of it as quickly as I do with the full live view.
With both of these apps, I’m worried about accidental streaming. I’m a little less worried with Periscope, as I seem to need to go through more steps before starting the broadcast. Given my limited experience and how quickly I picked up a troll, I think that I would recommend to all women to turn off location services by default – only use it if you really want to broadcast your location. For #et4buddy we may need to limit the live stream to a select audience as a private stream, just to avoid the unneeded commentary of trolls.
When Apple released its latest iOS with the “open” Apple Developer Healthkit to help promote the collection of data on mobile devices and have that data reach research scientists, I was encouraged by the potential. So many people have mobile devices that are already collecting health data, wouldn’t it be great if that data could easily be shared with researchers? Apple released the new Developer Kit with a few apps, one of which was targetted directly to those with breast cancer (Share The Journey). I downloaded the app, but was quickly disappointed. The background information didn’t allow for me to say that my treatment was “neo-adjuvant” chemotherapy – which is becoming more-and-more common – especially for treatment of aggressive breast cancers. When I submitted the feedback, I received a reply that the app used “validated measures” – which translates to “we used someone else’s data collection tools” – but the app authors did not account for new treatment regimes. Any data that I added to the collection would be invalid, but there would be no way for them to know that my data was not valid, because there was no way for me to say that I didn’t “fit” within the background survey. So, what I see with this app is garbage in = garbage out. I deleted it.
I was Facetime’d into a presentation yesterday on technology, big data, and medicine. When I asked the presenter (Dr. Pavel Andreev) about the Apple Research Kit, his comment was that although it might be “open”, it is created by a company and limited to one platform. There is hesitance to build anything for a single platform (e.g. biased samples), but the bigger issue is that if there is no money in the platform, then the company could drop it. That is, if it doesn’t help Apple sell devices, then we may find that it isn’t supported in the future. For this type of application, an open-source / crowd-supported platform is preferred.
I was really excited to hear about the Open Research, Open Data, Open Humans project (OpenHumans.org) – posted on the Quantified Self Blog today. I love the idea of the Open Humans project. It seeks to “break down barriers that make it difficult for willing individuals to access and share their data with researchers” (OpenHumans.org Press release March 24, 2015). Throughout my cancer treatment I collected a lot of data about myself. I always felt like it was such a waste that there was no way for the data to get into the hands of researchers. The academy (higher ed in general) spend so much time and energy protecting the privacy of individuals in research studies, that they do not allow for research participants to openly share their information. The model behind the Open Humans project is based on the premise that some people do want to openly share their information. Sadly, the initial studies are only open to US Citizens or permanent residents (I’m a resident alien). This is one project that I’ll be keeping my eye on.
Would you be willing to openly share your data in the OpenHumans project?
This post was simultaneously published here and on Maha Bali’s blog.
Maha: So i am now definitely NOT going to et4online 🙁 I just wanted to confirm that some of you are going in person so that we can book our poster place and change you to ‘first author’ on the #rhizo14 autoethnog discovery session.
Rebecca:I will happily join you in the presentation via Hangout/Skype/FaceTime – whichever streaming media is working best for you at the time. We can test it in advance of the presentation. Now that I have a new iPhone, I’m getting much better speeds on it, so if the conference wifi sucks, I can still connect you over my phone!
Maha: Awesome, Rebecca. I’ve also got a “duty” as a steering committee member to interview people during the conference. I was gonna do virtual people but I might as well also meet all my friends who are present there, right? 🙂
I’d love it if you could show me the Tech Test Kitchen while you’re there. We could agree a time for it in advance.
Rebecca: Sounds like an awesome plan … we could play with what it means to be a virtual participant ‘buddy’ … and then maybe write a paper on it for something like hybrid pedagogy … on the ways we are helping virtual participants and face-to-face participants connect or something like that …
So we could use the conference as an experiment into ways to enhance the conference experience for both virtual and in-place participants. Sort of a way to bridge the divide … I can be your ‘feet on the floor’ for a few specific segments of the conference, which I think would make the conference more meaningful for me too … you can encourage me out of my comfort zone into exploring presentations that I might not otherwise engage in …
Oh that sounds like so much fun!
Maha: oh my GOD YES that is an AWESOME IDEA REBECCA!!!
You know I am also responsible for the virtual unconference, supporting Jesse who will be there on the ground. Are you planning to attend that?
Jesse and I were joking that if I attended the unconference we’d both sit there in the midst of ppl face to face and be tweeting on our phones 😉
Rebecca: Ya, I can be there for the unconference. I’ll just plan to fly out on Friday evening.
Out of this conversation, an idea was born. We both realized that by Rebecca bringing Maha to the more social aspects of the conference, that it could enrich the conference experience for both of us. We decided to call the pilot project a virtual buddy program (hashtag #et4buddy). We shared it with et4online social media chair (Robin) and unconference chair (Jesse) and based on their enthusiastic responses, we then shared it with Laura Pasquini and the steering committee as a whole.
During pre-selected conference activities (such as social events), the virtual buddy program partners a few virtual conference participants with participants who are physically at the conference. The partners connect using video conferencing, allowing the physical participant to share the experience with the virtual participant. The goal of the program is to enhance the conference experience for both the virtual participant and the physical presence participant.
Since the interviews and conversations may be of interest to other virtual participants, anytime we have permission of those involved, we will record and post the video clips. Follow #et4buddy on Twitter for live updates, and use the hashtag to make suggestions. We will be playing with a variety of different technologies to make this happen. We are looking at mobile technologies that can be used to enhance the virtual participant experience.
This year, we are piloting the program, with Rebecca being the buddy for Maha. However, we anticipate opportunities for additional virtual participants to join hangouts, and other in-person participants may volunteer to provide buddy support. During the unconference on Friday afternoon, we will actively encourage more people to try out the virtual buddy program.
Many thanks to our sponsor, iDesignEDU (http://iDesignEDU.org) for providing Rebecca with MiFi access throughout the conference. Special thanks also to Whitney Kilgore for helping arrange sponsorship and providing logistic support.
I’m a student on medical leave. I taught a course last year, so I’m also a part-time professor until the end of 2015. In Canada, term adjunct is used differently than in the US – but I would be the US equivalent of an adjunct professor. I now live and work in the US, but still have an affiliation with the University of Ottawa. In September, I hope to be off medical leave and back to full time student status.
I’m also looking for opportunities to teach online in the fall – if anyone needs an ed tech instructor, please let me know ;-). So, there is a chance I may actually be affiliated with two institutions in September. I am also actively engaged in a few research projects. One of them is clearly in my role as part-time professor at the University of Ottawa – so my affiliation is clear. The other projects, however, are not in any way related to my thesis work, nor my role as a part-time professor. So, the projects are in no way related to my work at the University of Ottawa.
Why does it matter? The significance is largely in the form of how I fill in the “affiliation” section of various publications I’m working on, but also on the requirements for whether my research must be approved by the University’s Research Ethics Board.
“Members of an institution (i.e., its faculty, staff and students) may be affiliated with other institutions, or may be engaged in consulting or other professional activities in a separate enterprise, or in student co-op work or field placements. If members of the institution make reference to their affiliation to the institution, or use any of its resources when engaging in research, they should submit their research proposal to their institutional REB for research ethics review in accordance with this Policy.”
If the University of Ottawa is not providing any resources for my research, and I do not claim any affiliation in the related publications, then I am not obligated to seek REB approval. It is not that my research is in any way unethical or could cause harm, more that seeking REB approval slows things down and doesn’t add any value to the process. Unnecessary REB approval takes time and effort away from research that does benefit from ethics approval.
I love to collaborate on research projects. I love to do innovative things with educational technology. I despise process for process sake – which unfortunately is what most of my experience has been relating to REB approvals (e.g. changing informed consent documentation to align with templates that make REB approval easier, but actually make the consent process less informed).
In our new world of adjunctification and alt-metrics, does an affiliation matter? Am I better to declare myself as an itinerant scholar than a scholar associated with a particular university? What is the value of the affiliation, especially when the institution isn’t providing any resources to support the project?
Reading Jonathan Rees’ latest rant about MOOCs “MOOCs and the promise of higher education“, a new measure of effectiveness occurred to me. I totally disagree with Jonathan’s comments about a need for a denominator. MOOCs are such that I don’t think the number of students who initially sign up is a measure of anything, except perhaps in marketing effectiveness. It tells us nothing about the courses effectiveness.
I do think, however, if MOOCs are to “change” education and in particular if they are in any way going to change the economics of education, then there is an important metric we need – which we are not seeing. I’d like to know the total cost of producing a MOOC, and compare that to the number of students who successfully complete it. The cost per successful student, might actually tell us if the MOOC is meeting its goal from an economic perspective.
Does putting money into high production values on a MOOC increase completion rates? That, I think, would be an interesting question. I’m pretty sure someone has the data – perhaps the Coursera folks could tell us a little something about the relationship?
I am working on an article that provides a framework for describing MOOCs. I was inspired to do this after reading several case studies that failed to adequately describe the context for the MOOC in which they were reporting. As an instructional designer and educational researcher, I need to understand the full context of the MOOC before I can decide if the results being reported upon are of use to me.
This framework is a work in progress. I would encourage you if you have an option, if you think I’m missing something, of if you think something shouldn’t be here, please let me know. Also, as I am still working on this article, I would be happy to have one or two co-authors if you are interested in making a substantive contribution to this work.
I currently have 10 characteristics that make up the context of a MOOC. They are: philosophical underpinnings, subject, structure, students/learners, time, size, technology, cost, access, and credentials. There is definitely overlap in some of these categories; however, there are also nuances to each, such that I think a rich description of a MOOC must draw upon each of these categories. I describe each in more detail below.
Philosophical Underpinnings
Most traditional university online courses are based upon social-construstivist learning theory, and self-paced eLearning is based upon behaviourist/cognitive learning theory.
MOOCs on the other hand can be based upon a vast array of learning theories. The two most common are the cMOOCs based upon connectivist learning theory – where the goal is to foster networked connections of people and objects surrounding a topic. xMOOCs on the other hand are typically based upon behaviourist/cognitive learning theory where learners work on their own through a set of videos and problems on the topic. There have, however, been explorations into MOOCs based upon different types of learning theory, such as the NovoEd, “Design Thinking Action Lab”, whose pedagogy was based upon constructionism.
Subject
The subject being taught or addressed in the MOOC matters when you are looking for “what works” from an instructional design perspective. What works in teaching computer science is likely to be less effective when teaching history or English. In addition, the same subject could be tackled in vary different ways when you consider the other categories in this framework. We as designers and scholars need to be careful not to generalize across topics, even if the press is want to do this.
Structure
Structure is closely related to the philosophical underpinnings of a MOOC. Structure refers to the components that make up the MOOC itself (e.g. does the course have: learning objectives, course videos, course interactions, activities, assignments, synchronous sessions, etc.)? Understanding what makes the MOOC is necessary when attempting to interpret the results of the MOOC’s evaluation.
Students / Learners
Who is the target audience for this MOOC? What is their expected skill level? What is their expected digital literacy level? When designing a course, one of the first questions you ask is who the student or learner is. If you say “anyone who wants to”, you are being naive. The creator of the MOOC has someone in mind, even if it is themselves, when they put the content together. We need to be more vocal about who that someone is – if not in our MOOC offerings themselves (so as not to discourage people) at least in the scholarly reports and evaluations of MOOCs. Some of the reported “failure” in MOOCs occurs because a portion of those taking the MOOCs are not in the target audience. They do not have the requisite digital literacy skills prior to entering the MOOC.
Time
MOOCs very in duration from days to weeks to months. One of the features of a MOOC is eventedness. This supports the idea of the MOOC as a special event, or a limited time community of practice. The length of time is significant when you are evaluating a MOOC, as participation and completion rates may very likely be tied to the length of time the MOOC runs. If it runs too long, learners may not be able to commit the time. If it is too short, there isn’t enough time to form connections (especially in cMOOCs). In the cMOOC sense, there are courses like DS106 which have eclipsed this boundary and become an entity in and of itself; however, for the most part MOOCs are events – they have an eventedness that helps to make them success.
Size
Rather than using the hype language, let’s talk about the size of MOOCs. What about the size makes a MOOC different from traditional online education? First off, MOOCs are typically large enough that teacher – learner interaction is an unreasonable expectation. In a traditional online course, you may have 30-students, and teacher-learner interaction is expected.
One question that often gets asked is how many participants are necessary for the MOOC to meet the “massive” criteria in its name. Relating size to pedagogy, massive could simply mean large enough that the teacher-learner relationship is no longer feasible. In online learning, once you move beyond 30 or 40 students in a single class, you can not longer develop the same connections. As an instructor, you much then adopt a different pedagogy. This different pedagogy may change based upon the different scales of massiveness. We don’t know what those number are yet – so we need to be clearer when we report on the number of learners in a MOOC. We also need to outline the number of learners at different categories – for example the number that sign up, the number that lurk, the number that complete most of the activities, etc.
Technology
The underlying technology supporting online courses affects the pedagogy. Most LMSs (e.g. Blackboard, Moodle) are built with a socio-constructivist learning theory in mind. The courses in these platforms are typically very presentation/reading followed by discussion oriented. The platform lends itself well to delivering some form of textual / video presentation followed by reflection or discussion. The system supports learner-learner and teacher-learner interactions.
MOOCs on the other hand very based upon the platform in which they are delivered. Many connectivist MOOCs do not specify the platforms – rather, they provide content on a website, and allow the learners to decide which technologies support interactions. I recall one MOOC, EDUMOOC, which coincided with the launch of Google Plus. The MOOC itself became a study in the advantages and disadvantages of Google Plus as a platform.
I’ve also talked to professors who have created courses for Coursera. Again, they platform constrains what they are able to do in the design of the course. The platform provides expectations of what a course looks like, and also enables (or doesn’t enable) certain types of interaction. We need to hear more about how MOOC design decisions were made because of the delivery platform.
Cost
By definition MOOCs are open courses, but cost is not just in the cost of signing up for MOOCs. There are costs associated with required textbooks or required readings that exist behind a paywall. These are costs to the learner. There are also production costs associated with the creation of the MOOC itself. Does a MOOC need a $20000 or $50000 or more budget to be a “quality” MOOC?
Access
Like cost, the term access is related to the openness of MOOCs. Traditional online courses are housed within an institution’s learning management system. Students are given access to that information for a specific period of time, and at some point in time that information becomes unavailable (it gets deleted). This is also true for some MOOCs.
In addition to access to students while they are taking the course, there is another level of openness in MOOC content. That is, does the MOOC provide permission for remixing. Can other instructors use part of the content? Can the content be modified to better suit the needs of a different class. Can other instructors effectively extend the content?
Credentials
Credentials in a MOOC support different purposes. Sometimes a certificate may serve as motivation for students to complete. The thought goes something like – if I am going to do A, B, and C … if I only need D to get the certificate, I might as well do it – since I already did the first few parts. There are also students who need the certificate as proof of their learning (or participation in the MOOC). The way in which credentials are provided, and the criteria for receiving the certificate may have an affect on the way students interact with the course.
In summary, In order for this area of research to mature, we need to be able to make valid comparisons across MOOCs. This cannot be done successfully if we do not begin by adequately describing the MOOCs in which we are researching. As scholars we need to start doing better job providing rich descriptions of the MOOC in which we are reporting. I hope this framework helps to provide a way to better describe the context of MOOCs, so that we can better critique the evaluation and design of MOOCs.
Finding Stuff on the Internet – Effective Searching
In considering digital literacies, I think one key literacy is the ability to effectively find stuff on the Internet. So this Storify is a collection of resources to help us find stuff on the Internet.
Back in September/October 2012, Google created this little self-paced MOOC on using Google Search. I found several of the tutorials to be very useful – however, I do caution that Google Search on an iPad (mobile Safari) does not the same features as Google Search on the PC or Mac. I recommend doing these tutorials on a PC or Mac.
This clip demonstrates some the search features of Google that are taught in the Power Searching with Google course. I created this little video to help my students find recent reviews of technologies. I find recent reviews (less than 6 months old) to be really useful when deciding whether or not to download an app.
Google also has a search tool just for academic articles, called Google Scholar (scholar.google.com). The screencast shows you how to setup Google Scholar to connect directly to your University Library. At uOttawa, when you are on-campus this happens automatically, the procedure in the video gives you the same service from anywhere.
Voice search is one of those features that seems silly, but is awesome once you start using it. Not convinced? Here are a few ways to turn voice search from a silly gimmick into a useful productivity tool. Why Voice Commands Rock Google's been pushing voice actions for awhile, adding tons of new features and trying to make it seem more appealing.
What to search when on your phone? Google has a solution for that too (on Android phones). Google Voice Search is also available on any Chrome browser – just hit the microphone in the search bar and tell it what you are looking for. I was really impressed with how quickly it worked.
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Last week I ended the Ed Media conference in beautiful Victoria British Columbia. Although I signed up to attend the conference because of the content, when I got there I found mysel drawn to a lot of the sessions in the emerging scholars stream.
My take home message from the Getting Published in Educational Technology Journals, presented by Dr. Catherine McLoughlin, included:
Start with a strategy. Make a plan for where and when you want to publish, including conference proceedings and journals.
Monitor 10-12 journals. Choose 10-12 journal in your area and sign up for the TOC alerts (emails with the table of contents for each new issue).
Read lots. In order to be a good academic writer, you need to identify what good academic writing looks like. To do this effectively, you need to read lots of articles.
Avoid using data (or too much data) in conference papers. Publish in peer reviewed conference proceeds, however, save the data for the associated journal article (which typically can only re-use 1/3 of the conference proceedings article).
Never let a year go by without publishing something. This goes back to starting with a strategy!
As homework from the session, I decided that I would look for 10-12 journals and sign up for TOC alerts. My first step was to choose journals. I currently have nine on my list covering both educational technology and medical education, which are:
Educational Technology Research and Development
British Journal of Educational Technology
International Review of Research in Open and Distance Learning
Computers & Education
Educational research
Journal of Computer Assisted Learning
Medical Teacher
Medical Education
BMC Medical Education
Rather than signing up for email alerts, I decided that I would prefer to recieve notifications using my RSS reader. The RSS reader (RSS stands for really simple syndication) allows me to subscribe to updates and read them from any of my devices (computer, iPad, or iPhone). The service that I am using is free, Feedly (http://cloud.feedly.com). The process is pretty simple:
Last week I presented a poster at the Canadian Conference on Medical Education (CCME) about my experiences creating eBook participant guides for faculty development workshops. I talked a little bit about my experiences in the blog post Getting an eBook published in the iBookstore.
In education, technology for technology sake is often thought of a bad thing. You will often hear that technology in education "needs to start with the problem not the technology" or "needs to start with the pedagogy not the technology". There was a time that I would have agreed with those statements. I have often said that you cannot just introduce a technology to the classroom without a purpose for it, otherwise the introduction of the technology will fail. Poorly introduced technology adds unnecessary complexity to lessons, and reduces the learning (I still feel this way). As a practitioner, bringing in a technology just because it is cool is a recipe for an unsuccessful project. The technology needs a foundation to stand on.
However, as a researcher I'm not so sure. I have seen really interesting innovations be dismissed as technology for technology sake – as a technology that isn't solving a problem. What I think is missing in this is the view of the the technology as an opportunity. In marketing, when you create a new technology, you know that the users of the technology will do things with it that you never anticipated. The user of the technology will find problems that you, as the creator of the technology, never concidered. These unintended uses are opportunities.
I recall a time in my early PhD studies, telling a professor that I don't believe in technology for technology sake, and yet I find it highly ironic that I specialize in mobile and tablet learning. The parts of my research that I find most interesting are in the discovery of how we are changing the way we teach because of new technologies. I am interested in the opportunities that these new technologies provide, rather than the problems that they solve or the pedagogy that they support.
So for me, the part that is most interesting is the opportunities, and perhaps the unintended consequences, of technology adoption in teaching, rather than in the problems the technology is trying to solve. In focusing on the opportunties rather than the problems, I am looking at technology for technology's sake. So, I must confess, I am studying technology for technology's sake, and I think that is is a good thing.
