MEAction: Engaging People with ME as Partners in the CRCs

[AndyPR]

The National Institute of Health’s RFA for ME/CFS Collaborative Research Centers breaks new ground. For the first time, the funding agency is strongly encouraging researchers “to establish partnerships with patients groups and solicit their input” as part of their research plan.

#MEAction assembled a team of volunteers to assist researchers in thinking about this, and today we release the first version of “Engaging People with ME as Partners in the Collaborative Research Centers.” This document shares best practices identified by the volunteers, along with resources for more information.

“Engaging patients and caregivers in research is not a new concept,” says Jennie Spotila. “Patient-centered approaches to research have been developed and applied in many areas, but this is the first time NIH has encouraged it in ME research.” Spotila led the volunteers, drawing on her training as an Ambassador for the Patient Centered Outcomes Research Institute. “We are fortunate that our team could rely on what PCORI and others have already learned,” she added.

http://www.meaction.net/2017/04/02/engaging-people-with-me-as-partners-in-research/

 

[AndyPR]

Jennie Spotila's blog on this subject - http://occupyme.net/2017/04/06/best-practices/

How can people with ME be more engaged in research? I mean really, meaningfully engaged from the design phase all the way through to the dissemination phase?

I have an answer! With the help of #MEAction, I led a group of volunteers to develop best practices for researchers to use as they partner with people with ME. Earlier this week, we published our report and sent it to as many researchers as we could.

This was a terrific project that allowed me to combine lessons I’ve learned in a variety of contexts. I have had the opportunity to serve as a member of FDA’s Patient Representative Program, and I recently qualified as an Ambassador for the Patient-Centered Outcomes Research Institute. I am also a volunteer member of the CFS Advisory Committee’s Working Group on Patient Engagement. It’s been a steep learning curve, but this project gave me a chance to apply what I’ve learned in a way that will specifically help ME researchers.