Here at PCORI, we strive to change the way comparative clinical effectiveness research is done, to make it more inclusive of patients and other healthcare stakeholders. As part of that emphasis, we require patient and other healthcare stakeholders to be meaningfully involved in the patient-centered outcomes research (PCOR) we fund from start to finish. We believe this approach will increase the chances that the resulting evidence will be useful and relevant to patients and those who care for them and thus more likely to be taken up in clinical practice. We’ve now taken the latest step along that path by launching the PCOR Partner List.
The concept behind the PCOR Partner List has been discussed since we were established – facilitating the establishment of research teams that represent the sorts of partnerships we require. The question had been not whether we wanted to facilitate making such connections between scientists and others who have not been part of the traditional research process, but how. Both communities share a strong desire to partner to improve healthcare practice and outcomes. However, patients and other stakeholders often do not know how to connect with researchers interested in their ideas. Similarly, even enthusiastic researchers can be unsure of how to locate non-researchers eager to bring valuable expertise and insight to a research project.
The PCOR Partner List seeks to be a mechanism that can facilitate bringing together the worlds of researchers and of patients and other stakeholders to establish those partnerships.
How it works
To be added to the PCOR Partner List, patients and other stakeholders indicate interest on our website. Then, we email them a link to a short form that asks about their particular interests and experiences. The PCORI Engagement Team then follows up by providing the names and contact information for potential partners to researchers applying for appropriate PCORI research funding opportunities. The process is completely voluntary, and no individually identifying information is made public. There’s no guarantee that those who express interest in partnering will actually become part of a research team, and applicants who do make a connection won’t necessarily have a better chance of being funded than those who establish partnerships in other ways.
Initially, we’ll seek to facilitate these connections for each of the three currently open targeted PCORI Funding Announcements (PFAs)—on obesity, transitional care, and large pragmatic clinical studies focused on a prioritized set of clinical topics. There are many ways to partner on a PCORI-funded project, such as serving as a member of an advisory council, reviewing materials targeted to stakeholder communities, or providing subject matter expertise as a patient with lived experience.
Why now, and what’s next?
We launched the PCOR Partner List at a crucial juncture in our history. We are becoming more targeted in our funding announcements, so it is more practical to identify patients and groups whose interests align with those of the researchers we support. Although we’re trying out this concept on three PFAs, we plan to expand it as we release more targeted funding announcements in coming months.
The PCOR Partner List is the latest addition to the resources we provide to help applicants learn how to engage patients and other healthcare stakeholders in their work. Others include our recently launched Patient and Family Engagement Rubric, which illustrates various options for incorporating meaningful engagement into the research experience and includes a set of sample engagement plans that can guide researchers as they craft their proposals.
Sign up today
We’ve already received an enthusiastic response to the PCOR Partner List. Forty-three people responded in the first three days after the form became available online. All major healthcare stakeholder groups were represented, although the largest response came from patients and patient and caregiver advocacy organizations. As of today, 75 people have signed up. The PCOR Partner List will close for this round on April 4 at 5 p.m. (ET).
We hope you will share this opportunity with friends, family, and colleagues who may be interested in partnering on a PCORI-funded project. While we cannot guarantee that you will be contacted by a researcher, we hope that this initiative creates more ways for patients, stakeholders, and researchers alike to initiate a PCOR conversation and build true partnerships.
Brown was a Program Associate on PCORI’s Engagement team
Sheridan is PCORI’s Director of Patient Engagement