How You Can Help a Health Research Institute Answer Pressing Questions

The trend over the last decade has been Americans’ ability to tune in to their favorite reality TV shows and vote on who should advance to the next round.

The newest trend, however, is that you can help decide on something much more important: which proposals the Patient-Centered Outcomes Research Institute (PCORI) should fund to answer some of the health care questions that matter most to patients.

Too often, patients and their caretakers are left guessing about options for preventing, diagnosing and treating various conditions. These questions remain because the research hasn’t answered them, yet. PCORI was created to address this problem by funding research to give patients, their caregivers and clinicians the evidence needed to make decisions that reflect their preferences.

The range of questions that need to be explored through high-quality research is endless. PCORI gets hundreds of research proposals but only funds those most likely to improve practice and patient outcomes.

PCORI takes a unique approach to identifying those projects—asking patients and others from across the health care community to work with scientists in reviewing proposals. PCORI does this through an open application system, then selects and trains members of the public to serve on application review panels. These reviewers bring to the process invaluable experience and understanding of the challenges patients face.

“Incorporating the incredible passion and experience of patients and caregivers into the selection of research projects is the foundation for producing information that we can all use to make decisions,” says Sue Sheridan, PCORI’s director of patient engagement.

PCORI’s patients and other stakeholder reviewers conduct an online review of up to 10 proposals. They then meet with scientific reviewers to make recommendations about which proposals to fund. PCORI makes final decisions based on their input.

“It was a rewarding experience.” said Crystal Brown-Tatum, a Houston, Texas, patient advocate who recently participated as a reviewer. “Everyone on the panel wanted to hear my thoughts. They appreciated what the patients were bringing to the panel.”

PCORI hopes to build a diverse community of reviewers who can help identify patient-centered projects likely to produce useful, real-world evidence.

“The great thing about PCORI is that they provide training, and that was really helpful to me,” Kim Bailey, research director for Families USA, a Washington, D.C., based patient advocacy organization, said of her reviewer experience. “It made me feel like I went in to the review process prepared.”

If you would like to help shape the future of research designed to help patients make better healthcare decisions, visit PCORI’s website, pcori.org, for more information about how to apply to be a reviewer.

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