The power imbalance between patients and clinicians

[Amy Ma]

Thought this might be an interesting topic to share.

Power imbalances don't have to be limited to those between clinician and patient. Even power imbalances between nurses, doctors and staff can be harmful.

https://patientengagementhit.com/news/amp/understanding-the-power-hierarchy-in-patient-provider-relationships

[JoAnne Mosel]

I'll even go so far as to identify power imbalances between patients. Different patient partners may be endowed with more power from the research team than others. Which patients "look better" to the study at hand and are given priority over others when it comes to scheduling meetings.

[Annette McKinnon]

I agree with you JoAnne. There are a few patients I know who have been deeply involved for many years, since even before I considered being involved. It's true that they showed the possibility of deeper inclusion when engagement was uncommon, but sometimes their outlook is very much like that of a professional. They don't even seem to see the difficulties that many of us face just in finding an open door.

They are accepted as peers (it seems to me) and occupy a different area of engagement than a lot of us.

[JoAnne Mosel]

Annette. Yes, I've heard of the "slide to the right" as well.

In the field of public accounting, "independence" is an overarching principle; one to be strictly adhered to and sanctions are in place if one veers off. I think the issue of bias creeping in in favour of researchers speaks to the need for a formalized structure of patient advising, at the best, or strong encouragement to always keep in mind those for whom we are advocating, at the least. I think of it in terms of "maintaining a critical eye". Perhaps this is a topic to explore in and of itself.

[Leora Simon]

There is actually a term for this in the literature; they call it "professionalization of patient partners". It is definitely a topic in itself especially when it comes to people who, like me, have a background in healthcare/ research. I am no longer comfortable with being a patient partner for a project unless it specifically addresses either a) an illness I have personally experienced or b) a service I use because I am very aware that I am not representative of the general patient population. I honestly feel that other people should be given priority-people who don't already have a voice in the system. I am very aware that my background gives me an understanding of healthcare and research that most people do not have and this both alters the way I see things as a patient and how I am treated as a patient partner. This bothers me a lot because I believe that patient engagement is only authentic if we value patients for their experience.

[Annette McKinnon]

There's a lot of talk about people who have no voice in healthcare, and I see more efforts being made to include a more diverse and less experienced group.. Unfortunately there is seldom enough time (or money) for a proper effort.

I don't have a healthcare background but I did spend 20 years recruiting people for focus groups, and there was a reason our clients hired us to do it. It's hard work getting the ideal group to be advisors, and /or give their input.

Recently I wrote a blog post about being considered an 'expert patient' or 'professional patient'. It was popular on Twitter. http://bit.ly/2LBoJr1

One reason I keep trying to be helpful is my belief that if people who are professionals, or are very experienced have problems with the system, then how hard must it be for people who are less adept?

[Leora Simon]

Annette,

I continue to work in patient engagement for the same reason, I think my point is more that I have come to realize that I am in the position to actually promote change. Instead of replacing someone else in patient engagement initiatives I can leverage my knowledge to try to change the status quo. However, I know many people who have degrees in medicine, nursing and research are considered the "patients" on a research and don't see that as a problem. I think that is part of the problem as well. I agree with you that time and money is a problem but I think this is more a problem with the way projects are funded in academia. I know what I am proposing in extremely hard to change, but I am hopeful that with enough support it can be done.