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 http://bcbecky.com 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)?