Patient engagement – what type of problem is it? #medx

In looking at the topics for the Patient Engagement Design course, one sees patient engagement as a design problem, a cognitive psychology problem (study of motivation more specifically), a behaviour change problem, and a measurement problem. However, that isn’t how I see patient engagement. Upon reflecting on it, I immediately saw it as an education problem – in that medical staff need to be educated about the patient experience and patients need to be educated about the medical system in which they are suddenly becoming a key component.

I find it interesting that in all the readings, we don’t see anything from the realm of adult education. There are overlaps with cognitive psychology and behaviour change (after all, a bit part of education is behavioural psychology), but the focus of cognitive psychology and behaviour change in the course doesn’t really approach the problem from an educational perspective.

Perhaps it is because of my background as an educator that I see the problem as one of education – and as such – I see solutions that involve education. Immediately upon exploring patient engagement, I find areas where education could be used as a means to help better define the problem, and help lead to better collaboration between patients and their care teams.

From the patient perspective, I find the first challenge in patient engagement is a lack of understanding of the medical system. How can I, as a patient, advocate for myself with the system when I do not understand who all the players are and what their roles are? The medical professionals in the system have lived and breathed the medical system throughout their academic and professional careers. They are so ‘inside’ the system, that they often forget what the system looks like to an outsider. The patient who is suddenly diagnosed with a critical illness is lost. They don’t have a context for understanding the medical system. They don’t know who does what, and why. They have no sense of the different scopes of practice and expertise. In addition to learning what it means to have a critical illness, they also need to figure out who to talk to, and who to trust. The medical system is a massive collection of specialist nurses, nurse practitioners, doctors and other specialists – each with their own roles and scopes of practice. Those who are ‘in’ the system have had years to figure out how the different people work together. As a patient, it is often expected that if someone is introduce by title or role, that I will know what that role means. I should just understand the different functions of the oncology nurse, versus the oncology nurse practitioner.

To me, it all comes down to a lack of education. This problem could be solved by a simple web-tutorial (or PowerPoint slide deck for that matter) that outlines who does what within a given organization. Rather than hiding behind the titles, and assuming that patients understand the titles, it would be more beneficial to outline the different medical professionals who might be called upon to provide care. This tutorial would go a long way to helping patients engage the right people when they need assistance.

I find it interesting that at Stanford there are many different workshops and tutorials to help you understand your disease (e.g. lymphodema) or help you understand your treatment (e.g. intro to chemo), however, I haven’t seen anything that tells me what the different medical staff do, and who is responsible for what. For example, take a look at the patient education center – http://healthlibrary.stanford.edu/patient/ – there is nothing to help educate the patients about who the different medical professional are. As a patient, how I am to ensure that I’m collaborating effectively with my care team if I have no idea who should be on that team, nor do I know who should answer what type of question?

So, for me, I’d like to see patient engagement start with some education to help patients engage – and that means knowing who to engage with!

7 Comments

  1. As a new cancer patient two weeks ago I asked my “Cancer Patient Navigator” (who I assumed was intermediary and representative in “the system” until I can get my feet under me) to ask my cardiologist to please forward me some information on the conflicting effects of chemo on my heart. The navigator told me there were places in the system where she was essentially blocked from going. This tells me a couple of things: first, though I have one body with multiple problems, these problems “belong” to different agencies within what looks like a single system + silos. Second, if my representative is powerless across disciplines then, of course, I am less than powerless. So where DO I engage?

    Yes, I’ve been to the training system and have taken home the overwhelming amount of information relevant to my condition but every bit of this designed from the standpoint of optimal endpoints with no recognition of glitches in between. As a self-reliant learner I’m managing to make my way through things but you are right Rebecca, there’s no educational sense to the scattering of materials, no order or workable things to know–just pounds of handouts. And given that my navigator / guide appears to be as powerless as I am, who might explain things to me?

    The question of the meaning of “engagement” needs to be clarified here too. My definition would be that I feel like a genuine and participating member in my health care project. All the other stuff Stephen mentions above as marking engagement are logistics, not participation.

    • I like the way you have differentiated participation versus engagement. I can participate in the logistics of my care, but not be truly engaged in it. I agree that there are issues with advocates or navigators that cannot access your specific information. From my experience, the scope of practice for a nurse is to provide the generic answer to questions. They can tell you generically how things work, but not specifically how things work. If I want an answer that is specific to my condition, then I need to get the answer from my oncologist – who understands my specific instance of the disease. The nurse isn’t trained to understand my specific instance, rather to provide more generic support. In the US system, I find that the more powerful advocates are nurse practitioners, as they have access into the doctor side of the system but also are more inclined to spend time with me to answer my various questions.

      • Semantics – you participate in activities that interest you and you find engaging. If you don’t find your self care training engaging – relevant and interesting – you will not participate or engage. This isn’t hard folks.

        • Stephen, I’m going to take your reply as immature and a put down of my legitimate concerns. This isn’t a joke or an argument over semantics. YOU need to learn some basic communication skills. Hint, reducing other people’s experiences and concerns to a game of how clever you are is not a good starting place.

          Rebecca, my expectations may be too high for a medical system I encounter by phone or by crisis. My local clinic by policy restricts access to my doctor to appointments never closer than a month away form when I call and reliance on the hospital has proved useless. Yes I see wonderful people when I do see the specialists and do have access to triage nursing during the day by phone but this is a one way relationship.

          All I asked of my navigator is she find out if a message from my cardiologist to my oncologist. The message went to my doctor but can’t be seen because she’s on holidays. All I can presume is it’s none of my business.

  2. Rebecca,

    What makes you think patients are not already engaged? A person is said to be engaged in when they are cognitively involved in a subject or activity. Take the act of going to the doctor. Before they make an appointment they have to decide that one is needed…this involves doing some research, i.e., talking with family or friends, researching something on the web, etc. Then one has to call and make the appointment, give a reason for the visit, take time off for the visit, arrange transportation, and show up for the appointment. Then while waiting they review the list of questions they want to discuss with the doctor. What about any of this suggests that patients are unengaged? Patients would not be in the doctor’s exam room if they were not already engaged.

    The problem is that doctors are not very engaging when it comes to communicating with patients. The evidence shows that many physicians interrupt patients, fail to solicit the patient’s story, ignore what patient say and seldom involve them in shared decision-making. Put another way, physicians still employ the same disease-focused, physician-directed communication style they learned in medical school. This style is characterized by physicians being in control of the visit, doing most of the talking, asking all the questions, making all the decisions and expecting the patient to assume a passive sick role. What is engaging about this? The alternative and preferred communication style of course would be a patient-centered style – the opposite of the physician-directed style.

    Patient engagement is an educational challenge – one of teaching clinicians how to effectively communicate with and relate to patients as people. The solution is a simple one. Listen to the patient – they will tell the clinician what is wrong. Listen a little longer and they will tell you how to fix the problem Patient engagement is simple if you look at it as what it is – a human interaction guided by rules of conversation and social interaction. One doesn’t need a degree form Stanford to understand patient engagement.

    Stephen Wilkins, MPH
    Mind the Gap Academy
    http://www.mindthegapacademy.com

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