My thoughts on patient engagement definitions – #medx

I’ve been thinking about how I will be blogging as I work through the Patient Engagement Design MOOC. I’ll be posting on this blog my general comments on the MOOC, and my feedback on the MOOC itself as I progress through it. I will be blogging at my specific experience as a patient that is undergoing treatment for bilateral breast cancer.

The first question asks that we reflect on what patient engagement means. I had also seen the term “patient activation” which was completely new to me. As a Canadian, I’m more familiar with the term “patient advocacy”, which isn’t really the same thing (seems to be more about empowering patients to advocate for themselves or have caregivers advocate for patients, so not completely dissimilar). I’ve sent a query to some of my Canadian physician friends regarding the term “patient engagement” within Canadian Medical Education. I’ll be curious what they have to say. I’m wondering how “international” the concept of patient engagement is? Or is this mainly a phenomenon brought out in the US by the insurance companies who are seeing patient engagement as a way to reduce healthcare costs (patients who are more actively involved in their treatment incur fewer healthcare costs)? If you have thoughts on these questions, please leave a comment!

Under the video in the course, there were two definitions provided:

Defined by Professor Judith Hibbard

Patient Activation: emphasizing a patient’s willingness and ability to take independent actions to manage their health and care

Patient Engagement: a broader concept that includes activation; the interventions designed to increase activation; and patient’s resulting behavior

Personally, I had a very negative reaction to the term “patient activation”. To me, this is exactly what is wrong with the physician view of patients. It makes me, as a patient, feel like a robot that needs to have some ‘feature’ or ‘function’ turned on. I so dislike the word “activation” …

Actually, I find both of these definitions to be rather ‘clinical’ feeling (perhaps because of the strong positivist nature of medicine?).  I find that the definitions are treating the patient as a “subject” in a research study, rather than a “participant” in a collaborative activity. To me this highlights how we need to shift paradigms in order to truly appreciate the topic.

For me, the first step in patient engagement is an educational activity. Patients need to be educated more about their medical diagnosis, but also about the medical system that supports their diagnosis (patients don’t know who should be on their care team!). I’ll blog more specifically about how this relates to being a breast cancer patient on my other blog. Being thrown into a whole new medical system (I moved from Canada only a month before diagnosis), as well as navigating a whole new diagnosis (I knew nothing about breast cancer), while also having to make some pretty serious treatment decisions (chemo or surgery first, which type of chemo, which type of surgery), requires a lot of learning. I was fortunate to be well educated, and familiar with medical research, so I could learn how to navigate some of the waters. I can only imagine how difficult this is for something who isn’t a life-long learner and who hasn’t been in school in the last 10, 20, 30 years… So, step one in patient engagement when dealing with a serious diagnosis should be to educate patients about the healthcare system, including who makes up (or should make up) your healthcare team and the different roles of each person on the team, who to ask which questions, etc. When I asked the folks at #bccww (breast cancer chat world wide – twitter chat) about what they wished they learned at diagnoses and through treatment, they commented that they got most of their information from face-to-face and online support groups (specifically from other patients) rather than from their healthcare team. If patients are not well connected to support groups, how can they possible navigate the system?

I like the idea of patient engagement as patients collaborating with their healthcare team. But I also find that physicians can act in silos, which makes it more difficult to be a patient. If the surgeon doesn’t interact with the medical oncologist then how do I know I’m getting treatment that is looking at all aspects of the disease? One of the things that drew me to the Stanford Women’s Cancer Center for treatment was that the first physician I saw (breast surgeon) brought in the medical oncologist during my appointment. At one point both doctors came into the room at the same time (actually all three doctors, as I first saw a breast surgery fellow, then breast surgeon, then medical oncologist). As a new patient, it was comforting to know that my medical team were located in the same space and actually talked to each other.  Note that I didn’t do the ‘tumor board’ at Stanford, as I learned later through another patient in a support group that I could self-refer, and it was moot at that point as I had already begun treatment.

Another aspect of patient engagement that I personally have found to be rather positive with my move to the US is that my medical team is available to me via email. This has been a huge improvement in my care, as often I have simple questions that shouldn’t require a trip to the doctor’s office to get answered (or I’m having side effects that don’t allow me to drive, such that an office visit isn’t feasible). Being able to send an email and get a response in a reasonable amount of time (I’m a big fan of same-day turn-around), means that I don’t need to waste office time for questions that can easily be answered. It also means that I get the answers when I need them – while I’m having the side effect, not a week later when my condition has changed. As a Canadian, the whole idea of being able to email my physician is foreign. As is the idea that when I visit my primary care physician I can ask about more than one issue in a single visit (but that is a whole other thing to rant about, perhaps in another blog post later)…

My questions to you are:

  • If you are a patient, how do you feel (what is your emotional reaction) about the definitions provided?
  • If you are physician educator, what does ‘patient engagement’ mean within your context (what country/speciality makes your context)?


5 responses

  1. in development Avatar

    The email utility sounds similar to what we have here. The logic of not showing everyone my records is fine but there’s no requirement that a critical message going to my doctor be passed on to me. The assumption being that my doc will call me, except because she was on vacation for over a month, and the clinic provides no back-up care to cover that, I would have had to wait at least 5 weeks for results that were known by the system. As a background, I’ve lived with congestive heart failure for months and months because memos were lost by my clinic and last time because my cardiologist was on maternity leave I wasn’t called for my supposed bi-yearly checkup for over 18 months. By then I was in total organ failure and died in isolation while waiting for the infection a doctor gave me to clear up and for dialysis to make me strong enough for open heart surgery.

    At this point there’s no one in the system I trust beyond my local doctor and the wait for her is never less then 5 weeks, even if she isn’t on vacation. I’m hoping that this class might inject the patient voice into the system, though being directed at “managing” patients seems to be the outcome.

    Ah well…

  2. in development Avatar

    Thanks for this Rebecca. I’ve enrolled in the course too and feel doubtful about intentions when patients are apparently taken as uncooperative, irresponsible and need direction from their superiors. As someone still deeply into the fumbling Alberta medical system who also watched his Mother die in the American system I’m beyond patience with ALL of it.

    That said, we go nowhere if we don’t speak up and “activate” the medical system to understand that critical comments might also be listened to. So I’m starting with deep mistrust here and see where it goes. Not a good place to start I admit but the chance to poke holes in the endless myth that patients are disengaged and needy fools while doctors are exemplars of the heroic resistance against the irrationality of illness perfectly in tune with my desperate needs (crap I hear every time I talk to the system) needs some countering. RANT OVER

    Didn’t know email was allowed in the US system for communication. My doctors won’t use it for “privacy” reasons so when my doc was on holidays and a message from my cardiologist to my oncologist approving the start of chemo came by email to my doctor’s office I had to request another doctor in the clinic read and then interpret the message to me. Purely a power trip and an exercise in putting me in my place. Who would it be who cares for me again?

    Have you decided where to call “home” for your comments in this class? In spite of my hesitations, since my first heart surgery, and subsequent ongoing care at the University of Alberta Hospital, my treatments have all been permissioned over to the teaching staff for training. Includes films of my heart surgeries, an abdominal aortic stent and a narrated full length film tour of my colon. (I’m running out of private areas here). What they’ve missed is a recording of when I started crying on the phone because the nurse wouldn’t answer a simple question on test results she had had in front of her for the week Leslie and I couldn’t sleep for worry waiting for them.

    I wonder if doctors have any idea the things people go through to be “cared for” by them?

    1. Rebecca - @rjhogue Avatar
      Rebecca – @rjhogue

      When I say email, I mean email through the EPR system (the myhealth online system) – so it is an enclosed email system, which deals with the privacy concerns. I’ll blog more about that on my BCBecky blog I think – interesting to see who answers the emails from the different systems. For example the oncology dermatologist answers the emails herself, where the my breast surgeon and medical oncologist have nurses that field all the emails. At PAMF, it was the oncologist and surgeon themselves that answered the email. So different across the different organizations.

      I’ve been double posting for the class, but I expect most of my stuff will go on my blog, as it will have a wider audience, but also be available after the end of the course. One of my pet peeves about the xMOOC environments is that the data is lost at the end of the course. So, if I want to it live beyond – and be available to others – I need to put it out there on my blog.

      An interesting point about the online system is that it only allows certain types of information to be shared. For example, a malignant pathology report cannot be shared on the online system. For that matter, the nurse could not print out a copy for me to read before seeing the doctor. I had to see the doctor first, before I was allowed to have a copy of the report. So, I totally understand the stress of the nurse having the information right in front of them, but not being able to share it with you and making you wait for the doctors appointment. If you are an ‘engaged’ patient, then having to wait can be one of the most stressful parts of the process .. and is perhaps a legacy issue from being patient engagement was seen as a good thing!

      1. Larry Chu Avatar

        Hi Rebecca, please note Liza Bernstein (@itsthebunk) will be online this weekend moderating comments from our patient engagement course. Liza is one of our ePatient faculty for the course. I will also be personally moderating and answering questions, and look forward to the discussions. Please also do take a moment to pin your response to our Padlet board which will persist after the course and is external from the Stanford Open EdX site (

        I also am not pleased with the sound of patient “activation”. I didn’t invent the term. This year we spent some time ideating at #MedX a new term for another word I hate “compliance” as in “medication compliance”. Medicine is entrenched in outdated terms. We need to change that.

        1. santina Avatar

          I think that the patient and the healthcare provider must communicate in order to understand what is the meaning of the disease because many times this is not the same for both. the narrative is important. be able to tell in the network helps them to express themselves and understand

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