Patient–expert partnerships in research: how to stimulate inclusion of patient perspectives

[A Former User]

It's an easy to read paper about very deliberate attempts made to equally include patients and experts in choosing research priorities - what worked and what didn't.

Part of the lack of power was that the experts were "we" while the participants were 'only' "I or my child"

I think this is a power imbalance- the patients are very du=isadvantaged when they are not known to one another beforehand, have never mmet, and may not realize their commonalities. We need the 'getting to know you' stage which PAN can provide to us as members. That could help.

This is might be a good paper to help with caregiver strategies

http://bit.ly/2wrm7Fl

"Based on the present analysis, a further four inclusion strategies are recommended in addition to the ones used in this study, to realize a more equal expert-patient partnership. The first two are related to the pre_‐_setting of dialogue meetings. First, the benefits and effects of patient participation in research could be made more visible to experts in the research field. This might reduce prejudice of experts towards patient involvement in research. Secondly, it is important to prepare and empower patients beforehand so that their experiential knowledge can be properly articulated and exerted at the level of equal partnership. Thirdly, strong facilitation of the process by a facilitator during dialogue meetings could help to reduce exclusion mechanisms. And finally, the dialogue meeting could be designed in such a way that the focus is understandable for all participants during the meeting and does not provide opportunity for one of the parties to dominate."

[A Former User]

So often when patients are gathered together for a research project or to work on some procedure guide they usually are nerved up, scared and confused. Why? They have not been prepared properly. They likely don't know the other patients or anything about them. They don't know any of the facilitators other than they have a bunch of letters after their name. They know very little about the project they are working on other than they have some kind of common bond with the other patients. Can you see why some research programs fail to produce.

Lets start at the beginning. You put out the call for patient volunteers sharing some of the information regarding the project. Set up the first meeting planning on accomplishing nothing professional for the program. The first meeting should consist of very little structure let it grow its own agenda .The first priority is a cup of coffee a chair and see how it goes, as time goes on you get everyone to give their name don't worry about their story. Next the facilitators give their name forget degrees and titles. Now a lite discussion of the project and what you hope to what you hope to achieve. Leave lots of time for questions but be prepared to deal with no questions. Again it is open time let people visit . Now as a wrap up you explain the formal information set up the next meeting and give the participants a little lite reading for the next meeting when you plan the next meeting have a half hour coffee time at the begging. You are still team building

Bill

[A Former User]

That sounds like the ideal way to get started, but not the most common.

I have certainly felt that nervousness walking into a meeting of a research team where I did not have enough information to open my mouth (or I guess I could have, but not without sounding stupid)

The next thing I read after I saw your comment was a paper by Sally Crowe and this is one of the things she said in it.

"I still respond to the explicit notions of shared involvement and responsibility inherent in the upper rungs of Arnstein's ladder. As well as addressing power in the partnership dynamic, I have other ‘Ps' that I think are important. These are: principles and values that underpin the partnership; a clear process and plan that takes account of the different people that you want to involve and engage with; an acknowledgement of the politics that play a part in partnerships; and finally the product of the partnership, that is, not losing sight of the purpose"

http://bit.ly/2gAAfof Research For All Journal. It's open access but you have to download it as a pdf

I put some of the ladders of engagement in tone of the other sections for discussion - I forget what it is called. They are jpegs

[A Former User]

Bill, Annette...such useful information you both provide...am in the very beginning of a project and the first meeting was "all business....the agenda"....no team building, nothing personal that the other PFA, I or, any of the other team members could grab on to, or build on. Bonding as a group HAS to HAPPEN for any group to work collaboratively, effectively. Having done facilitating as a long time career, learned early on that "you pay your money now or, you pay your money later, BUT you always pay!"

The PFA colleague and I met post the 1st meeting to discuss our first "experience" with this group - then we met with the project lead and discovered NO one on the team had worked with PFA's prior to this opportunity.....we asked if they had any comments, questions, or expectations they shared with her about working with PFAs. She said no. We 2PFAs are meeting again to see if we can have some time at the beginning of the next agenda at the 2nd meeting, to discuss our work together.

Will keep you posted....your information is so, so , so timely! " When a lesson is needed, the TEACHERS appear" - Merci, Thank you -Denyse