Transforming Patient-Centered Research

By Jennifer Sheridan, PAN Director of Policy Development


Texas State Director Israel Robledo and South Carolina State Director Adrienne O’Neill

On October 27-28, Adrienne O’Neill, PAN’s South Carolina State Director, and Israel Robledo, PAN’s Texas State Director, participated in a patient engagement workshop hosted by the Patient-Centered Outcomes Research Institute (PCORI).  Adrienne and Israel were selected from among 350 applicants to participate in the workshop.

PCORI is an independent, non-profit organization authorized by Congress in 2010.  Its mission is to fund research that will provide patients, caregivers, and clinicians with the evidence-based information needed to make better-informed health care decisions. 

The event, “Transforming Patient-Centered Research:  Building New Partnerships and Promising Models,” gathered input from patients, researchers, and healthcare community leaders on a draft process for indentifying research questions, reviewing research proposals for funding, and ensuring patient participation throughout the research process.  In addition, participants provided input on five key areas, including matching patients and stakeholders with researchers and disseminating research to the patient community.
Israel said, “The workshop was very productive with opportunities to provide input in the five key areas.  PCORI is changing the way research has been done by requiring the patient to be included in all aspects of the research process.” 
Adrienne added, “Being the first workshop planned, neither of us knew what to fully expect but were pleased with how open the participants were to accepting the tasks given to them and providing valuable input to PCORI.” 
The workshop is one of three planned for this fall to obtain input from key stakeholders.  Once implemented, the process will lead to topic-specific funding announcements that correspond to the five priority areas for research outlined in PCORI’s National Priorities for Research and Research Agenda and complement the broad Funding Announcements that PCORI issued in May.

Interested in adding your voice to discussion?  PCORI is currently collecting research questions from patients and others within the healthcare community to help the institute determine what research topics it will study in the future.  PCORI wants to hear about the health care questions people have or decisions people face.  If you are interested in submitting a research question, you can do so through the PCORI website.

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