Those are the right themes for the initiative that we’ve launched here at PCORI to “engage” patients, caregivers and other health care stakeholders in the work we do. We want you to be active partners as we build a rigorous research community guided by patients and focus our research agenda to address more specific topics. We want you to help us figure out what works in engagement – and ultimately, how to apply those lessons to better serve patients and the health care community as a whole.
Our goal is to help us figure out the best ways to get “meaningful” involvement by patient, caregiver and other stakeholder in the research process — something we see as part of our promise to regularly get input in shaping our ongoing work. It’s part of our pledge and promise to all of the audiences counting on us to get people involved in research that matters: help us determine what to study, help us do that work and get the word out and, perhaps most importantly, tell us how we’re doing.
PCORI has been reaching out to our many stakeholder communities almost from the day we were created. We’ve met in small and large groups, formally and informally, in Washington, DC, and a half-dozen other cities around the country, listening to scores of individuals, as well as representatives of patient, caregiver, clinician, researcher, and other health and health care groups. We’ve sought their comments on our National Priorities for Research and Research Agenda (what we should study) and initial Methodology Report (the standards for how research should be done). We’ve invited them to be part of the teams applying for our first round of research funding, and to review those proposals.
Now we are taking the next step – convening a series of workshops designed to continue engaging you, and all of our stakeholders, in helping us to refine and specify the research topics that we should fund.
Our first workshop, on October 27-28, will invite patients, caregivers, advocacy groups, researchers and other stakeholders to start working together as a community to talk about potential ideas for future research that will improve outcomes with a focus on those that matter most to patients. It also will support our efforts to change the way patients are engaged in research – figuring out promising ways for patients and caregivers to help identify the issues that should be studied, how PCORI will decide which studies to fund, and ensuring patient participation throughout the process.
Sue Sheridan describes the power of bringing patients and investigators together in research
Susan Hildebrandt explains the value of getting involved in PCORI’s work
Our second workshop, to be held December 4, will ask for recommendations for specific research topics and test our draft method for determining the basis of future funding announcements. And our third workshop, on December 5, will invite research methodologists, patients and other stakeholders to further test the process. People attending this meeting will work on how to select research questions and address methodological issues — issues that will help us refine the process to make sure that it addresses the needs of patients and those who care for them.
We hope you’ll consider joining us for these workshops, in person or via a live, interactive webcast. Attendance at the events is limited, but we plan more in the future. Learn how to express your interest here.
We firmly believe that the people most affected by medical research must have a central role in defining what should be studied and help to guide those studies. We believe this process can be not only inclusive but scientifically solid. So we look forward to receiving input at our workshops that will help to advance our shared goal of improving patient outcomes through research.
That’s our commitment, our promise, our pledge. You can look it up.
Sue Sheridan is Acting Director of Patient Engagement at PCORI
Susan Hildebrandt is Director of Stakeholder Engagement at PCORI
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