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Hospitalized children and his mother with sitting in chairs while doctor checking his pulse. Doctor examining senior male patient in hospital room.

Patient-Centered Outcomes Research: What an Opportunity!

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Over the past few weeks, we have shared with you that Families as Allies is helping the University of Mississippi Medical Center (UMMC) and other partners design a research proposal to submit to the Patient-Centered Outcomes Research Institute (PCORI) about the best types of mental health treatment for children ages birth to 21.

Patient-centered outcomes research is exactly what the name implies: medical research that includes patients and their families in conceptualization, design, implementation and dissemination. PCORI funds comparative effectiveness research, which means research that gives patients and families evidence about two or more ways to treat a condition so that they can make informed decisions about treatments that are right for them.

We are helping with the PCORI proposal by writing the “engagement” section and describing how the project will engage different kinds of groups (patients, families, researchers, policymakers, clinicians, and payers) in the project. We have talked to many of you and participated in several events involving different groups. If you would like to be part of this project, including if you would like to be involved in developing engagement plans, please let us know.

We have learned much from reading and pondering PCORI’s Engagement in Research: Foundational Expectations for PartnershipsThis quote is one of our favorites. We hope it will inspire you, too:

“My attitude was pretty typical, which was, ‘Let me find some patients and families that I can put on my grant and let’s build a Family Advisory Council … They can tell us which of our ideas are good, which of our ideas are bad, and we’ll have them meet periodically …’ I really didn’t understand the notion of coproduction and how do you partner with patients and families in earnest … It was immediately apparent that [the partners] had things to say and to add that we just weren’t thinking about at all. It went from this notion of let’s have an advisory board with some family representation to really understand that if this was going to work, they had to be central to the whole thing. ” ~ Researcher

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