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

[Alies Maybee]

Denyse, about your request for suggestions for the meeting with the researchers: how about asking them about the impact on the patient experience writ large that they envision resulting from their work (ie: why this particular piece of research beyond building careers).

It might be interesting to see what they think the barriers to implementation of their work might be and how they can build greater success in uptake into their research project.

I like the concept of tapping into their deep motives to make the world better -- that sometimes get forgotten in the press of needing to get funding and further a career.

[Carolyn Canfield]

Here are some resources from the UK and US on patient advisors in research. I'm hoping that you find them as interesting and useful as I have.

from the UK

Macmillan Building Research Partnerships – cancer-focussed but brilliantly generalizable

http://learnzone.org.uk/courses/course.php?id=109

National Institute for Health Research

https://drive.google.com/file/d/0B1PlISSsUqWieHFVVEhaaEx6T0U/view

INVOLVE

http://www.invo.org.uk/wp-content/uploads/2017/03/NIHR-Public-Involvement-Leads-National-Meeting-Report-2017.pdf

http://www.invo.org.uk/wp-content/uploads/2016/05/HRA-INVOLVE-updated-statement-2016.pdf

http://www.invo.org.uk/wp-content/uploads/2016/12/INVOLVE_payment_document_v4-NOV16.pdf

from the uk charity, Pathways: health for homeless people, with outstanding content on “expert by experience”

http://www.pathway.org.uk/wp-content/uploads/2013/05/EbE-Involvement-Handbook.pdf

from the USA

PCORI

http://www.annfammed.org/content/15/2/165.full

Here are two useful documents from Sally Crowe, the great UK thinker on co-production, co-design:

Final checklist_for_critical_thinking.docx

[Carolyn Canfield]

Virginia, please ask the organizers to invite more than one patient advisor on the committee!

It helps so very much to have the wisdom of "crowds" to bolster your own contribution and confidence. Best wishes. Let us know how things work out. Questions always welcomed here on the PAN groupsite. I've done my share of this work on conference committees and so have many other PAN members. It isn't often comfortable to ask the hard questions. We'll do all we can to support you. Courage!

Best regards, Carolyn

[Denyse Lynch]

Thanks Alies for your suggestion re questions to ask researchers.

Questions that bring to light personal motives, broadens, deepens, enhances conversations and can be more meaningful for everyone. The value, purpose in group work, is beyond the obvious facts - i.e. what sits on the surface, relatively easy to see, report on. What is below the tip of the ice berg.... the whole picture can really only be accessed by thoughtfully formulating, composing, asking questions, listening to responses and confirming understanding.

Think this enables "group members" to add to, omit from, re-arrange, re-organize their knowledge of individual perspectives and re-assemble for better comprehension of the whole picture.

Thanks, will keep 'you all' posted. Denyse

[Virginia McIntyre]

Alies and Carolyn

I appreciate your suggestions and advice. I like that I have PAN to assist me as I move forward.

Thank you

Virginia

[Carolyn Canfield]

Hey, that's what this network is all about! Your questions provoke my thoughts and new questions, and help me better understand the work I do, as well. PAN is an awesome gathering of talent and wisdom. Never hesitate to ask away! Best wishes, Carolyn

[Alies Maybee]

Denyse, I'm just re-reading this thread and am wondering how it is going with your research group. Alies

[Denyse Lynch]

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

[Alies Maybee]

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

[Alies Maybee]

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