Two-way street? A critical look at patient and family engagement

[Annette McKinnon]

Interesting transcript of a talk by Jennifer Johannessen

http://bit.ly/2A0k1On

From the CAPHC Conference last week in Montreal

"We should be the institution’s conscience, guiding and prodding and ensuring their actions are accountable. Our engagement should not just be meaningful, but challenging and substantial."

"the way we are selected means that the institution is only ever going to hear polite things from nice people, who integrate well socially with clinicians and executives. Who will likely find consensus within a pre-approved boundary. To the institution, we are essentially interchangeable"

‘Patient engagement’ is not subject to the same assessments and measurements used in all other departments throughout the institution."

Jennifer also said, "I don’t want to overfocus on money – it’s a symptom, not the main problem. My message here is simply that we need to be honest and acknowledge that in a group of equal contributors, if that’s indeed what we are, only some of us are being compensated."

[Lorraine Bayliss]

Great post! How can this be addressed? I would like to hear Jennifer speak on this topic. What structures can be put into place to ensure there is meaningful engagement and partnership? If we are misrepresented in a submission and the submission does not reflect what is written in the content of the research proposal, how is this to be addressed? It appears that bringing this to the attention of the researcher does not result in a change of practice. I believe in a partnership and that my voice as a person living with life sustaining therapy has a place in shaping research (my expertise). The researcher has the expertise to conduct the research on the research question. I expect to have the methodology and findings during the research process shared with me on a regular basis in a language understood by me. This has certainly happened with the ODPRN to name one association. I have the potential to help disseminate the results through my associations but I am hardly likely to want to be engaged if I feel I was neither informed nor engaged in the process.

It is a real risk taking experience to speak out to those who need to listen when you know that the process has not been followed. For me the research proposal was not approved when I and other patients where not part of the process. In other situations the expected steps were followed and my input after reading through the material was addressed. I was pleased that I definitely had a voice. The proposal was rewritten taking my feedback into account. I have chosen to be very selective in what research proposals I chose to participate in. I need to feel that I am respected, there is a real possibility that my engagement will be meaningful before I agree. To date that has worked well for me.

[Amy Ma]

I was fortunate to hear Jennifer live at this talk, given she was in Montreal, and I was part of the organizing committee for this event!

Very thought-provoking and original. She repeatedly stressed that her critique was in no way meant to undermine the value that us volunteers contribute in our capacity as patient and family partners.

Rather, it was a wake-up call that often, many voices are absent around the table, and will remain that way as long as the institution is not willing to divest its power. Social equity is at stake as long as the status quo remains unchallenged.

[Donna Thomson]

I loved this talk - Jennifer is terrific. I'm moderating a panel at the Brain Partners Conference in Toronto where Jennifer will speak on this again. Looking forward to what a room full of researchers will think! No one has any answers so I think the call will be for researching a 'science of engagement'.