How Patient Engagement Can Go Wrong.... what are your experiences?

[Alies Maybee]

Colin, you're experience and assessment mirrors my own. It is because of the perceptions of the HC community that we stick with the term advisor.

Having said that, advocates do complimentary and very good work. They are not in any way a dirty word in my books though, as you say, some in the HC community view them as such.

Perhaps the approach of some advocates is more confrontational in non-productive ways. I've found that a lot of people in HC can agree with something we raise or that is raised by advocates but have no power to make change. I image they are frustrated with hearing from advocates about issues they know need to be changed but are powerless to do anything. Bad spot. A little like the "caught in the middle" spot of middle managers who have responsibility but no authority. Been there and it is stressful and disenheartening.

[Carolyn Canfield]

Hi Colin and Kathy,

Ah, the controversy over "advocate". There was a time when the volunteers in the BC Patient Voices Network were literally banned from using the word!

Many of us thought this was rather odd, in that on the one hand we faced health professionals who were quick to say paternalistically, "We are all patients" and on the other hand, were anxious to enlist our patient perspective, which presumably they could not fulfill themselves.

I now teach (as a volunteer) a variety of healthcare professionals, with the greater part of my time devoted to medical students at the University of British Columbia. The curriculum embraces competency using the CanMEDS framework. Note in particular the role of physicians as health advocate.

This role of health advocate requires the physician:

"to support patients in navigating the health care system and to advocate with them to access appropriate resources in a timely manner. Physicians seek to improve the quality of both their clinical practice and associated organizations by addressing the health needs of the patients, communities, or populations they serve. Physicians promote healthy communities and populations by influencing the system (or by supporting others who influence the system), both within and outside of their work environments. Advocacy requires action.

So that is pretty clear about what "advocacy" means for physicians in professional practice.

I'd like to think we as patient volunteers, who choose to work in collaboration with health professionals, also practice a collaborative and parallel version of this same role for the collective of patients and caregivers. This applies whether we are involved with improving care quality, services design, policy and governance, training the next generation of professionals, research for greater impact on patient lives and more.

In spite of what I might do to dodge this divisive word, "advocate", this is an honourable and heroic part of what we do as patient advisors.

Thank you for your participation on this topic. Yes, we are all in this together!! A big element is cultural transformation. The healthcare professionals know this at least as well as we do as patients and caregivers. The only way to succeed is to proceed together.

Best wishes, Carolyn

[Colin Gillies]

I've noticed lately in committees at HCs that 'advocate'(n.) is a dirty word. I think the sentiment is that advocates don't open the conversation to solution-finding but rather are pursuing responsive action to their cause. (I could be wrong in that assessment). Advisors, on the other hand, seem to be regarded as partners in solution-finding. Maybe not equal partners. Yet.