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!