Patient & Family Partners in Research - are these truly the issues and experiences?

[A Former User]

Thanks Alies... my Steering Committee Group are interesting, committed and we are beginning to develop a collaborative dynamic. This is a challenge as we only meet every second month. Having another PFA on the team definitely makes a world of difference though, both to my focus, motivation and to the whole group. While my colleague & I share similar experiences with caregiving, my PFA colleague has been volunteering in palliative care in our local community for a few years. My perspective is palliative care within LTC. We do have readings in between meetings and surveys to complete. MY PFA colleague and I keep the momentum going for ourselves between SC meetings by having an informal get together weekly, to discuss the topics/issues and how our involvement in the meetings assist in covering the many different, important, patient/caregiver circumstances and perspectives.

We listen carefully and ask questions of our members as to how they see suggested improvements we are working on tie/relate back to "benefiting" the patient, the family, the caregiver. We ask for examples when we don't fully understand language, procedures, medical speak jargon and provide our own insights on benefits and/or challenges we "see" which they may not have considered.

Find this approach works as we, during our second meeting, are now being asked what we think, instead of us having to initiate questions or comments. A couple of the members have even approached us after the meeting and offered to assist us with any questions or additional information we might have or, require. And, they provided us their contact information, saying we could contact them any time.

Based on these experiences to date, I feel we will continue to work well and productively together and achieve our goals, objectives. The key is listening, observing and asking questions that bring the discussions back to the question - is this putting the "patient-first" and if so, how? What are the benefits? How does this help, not help? Does it create any barriers, obstacles or leave gaps?

Hope this provides some ideas.... and, if anyone has additional ones, please let me know. This is very much about communication tools, and the more we have to choose from the more effective we can be

Best, Denyse

[A Former User]

Thanks for the thoughtful response, Denyse. You make a great case for having more than one PFA on a research project (or indeed on any project). And, yes, communication is key as is relationship building. Cheers! Alies

[A Former User]

Denyse, I'm again re-reading this thread. I love your approach and think it is great advice for newcomers to being partners in research:

"The key is listening, observing and asking questions that bring the discussions back to the question - is this putting the "patient-first" and if so, how? What are the benefits? How does this help, not help? Does it create any barriers, obstacles or leave gaps?"

I found during my first experience on the Research Management Committee evaluating grant proposals that asking questions from the patient perspective was a powerful way of re-focusing the group. It also meant I didn't feel the need to be expert.

Keep us posted on your progress. Also, check out the course on PiR under Opportunities. It is a good one that involves lots of discussion online. Cheers! Alies