Patients Become Partners in PCORI Peer Review

Date: 
February 1, 2018
Blog Topics: 
Research,
Dissemination,
Guest Blogs,
Funding Awards

Peer review—independent assessment by recognized experts—is central to the research process, from deciding which study proposals to fund to evaluating articles for publication in scientific journals. At PCORI, our authorizing law requires the completed research we fund to undergo peer review, which ensures scientific integrity and adherence to our methodology standards.

But as we developed our peer-review process in 2015, we decided it should do more, incorporating our patient-centered approach to research while maintaining the principles of a time-honored scientific process. Traditionally, all peer reviewers are scientific content experts. But we added patients and other healthcare stakeholders as reviewers. The idea is that, along with asking scientists about the studies, we consult others with practical expertise and lived experience about the relevance, usefulness, and patient-centeredness of the studies.

To realize this goal, our partners at Oregon Health and Science University (including two of this blog’s coauthors), which helps manage the PCORI peer-review process, identified and trained a cadre of patients and other stakeholder reviewers. These reviewers assess completed PCORI-funded studies by analyzing the draft final research reports that PCORI’s awardees submit when they finish their projects.

More than 400 patients and other stakeholders have signed up to be PCORI peer reviewers. 50 percent are patients. 30 percent are patient advocates. 20 percent are caregivers. 100 have already completed a peer review.

Peer Review Done Differently

We began to engage patients and other stakeholders in our peer-review process in 2016, with a workshop at a conference on patient-focused healthcare issues. We tested reviewer materials to be sure that patients found them useful and clear, and that the patients’ work would meaningfully complement traditional scientific review. Our team then developed and refined online training materials for patient reviewers and outlines of questions that patients were best equipped to answer.

During PCORI’s 2017 Annual Meeting, we hosted another workshop for patient peer reviewers, in which we gathered feedback on the process, heard how their efforts have affected the way awardees’ final research reports summarize their projects and results, and brainstormed how to improve on emerging best practices. (See box below, Gaining a Seat at the Table) In the next year, we will be exploring improvements to peer review to benefit patient reviewers, including the opportunity to serve on an editorial board for peer review, and establishing a buddy system so that experienced reviewers can mentor new reviewers.

PCORI’s mission to incorporate patients throughout the research process is evident in the inclusion of several types of patient representatives—those with lived experience, caregivers, family members, and advocates from organizations that represent a disease or specific population. Peer review is no different.

A group of attendees at a PCORI meeting.

Patients and caregivers who participate in PCORI peer review attend a workshop on peer review at the 2017 PCORI Annual Meeting.

Want to Have an Impact? Become a Patient Peer Reviewer

PCORI is constantly seeking patients and other healthcare stakeholders with experiences and expertise to help us do a better job of assessing the importance of the studies we fund. Capturing the insights of a diverse group of patients is vital to providing a more holistic picture of healthcare choices.

PCORI encourages patients, family caregivers, and representatives of health-focused communities to apply to serve as PCORI peer reviewers. We’ll provide training and ongoing assistance to reviewers. For more information and to apply to become a PCORI peer reviewer, please visit our website. We look forward to welcoming more people to the growing community of patients and other stakeholders helping to support PCORI’s efforts to advance research done differently.

PCORI has offered a way for caregivers, including siblings like myself, to have a seat at the table.

Eunice Im
Gaining a Seat at the Table
Eunice Im is an administrator for a cardiology clinic, cofounder of the California Sibling Leadership Network, a caregiver for a sibling with autism, and a PCORI peer reviewer.
Headshot of Eunice Im

I was initially drawn to PCORI’s peer-review process because a member of my family has autism, and I have often served as a caregiver. That experience exposed me to the need for more patient-centered health care. Had my family known more about shared decision making and had easier access to information about evidence-based treatments for autism, my family could have been better engaged, which would have alleviated some of our emotional and spiritual distress.

So far, being a peer reviewer has been a constructive way for me to contribute toward creating a better healthcare system. I found the PCORI workshop I attended in 2017 very valuable in generating ideas that will lead to meaningful improvements in PCORI’s peer-review process. I left with a better idea of how to more skillfully contribute to the review process.

Being a part of PCORI's peer-review process has been a fulfilling experience. Siblings of people with disabilities and other chronic conditions are traditionally overlooked in health care. But over the course of their lifetime, siblings gather a wealth of knowledge and wisdom regarding what their brothers and sisters are experiencing. 

Family members of people with chronic conditions can be critical partners in deciding how to best care for those we love and playing a role in shaping the research that will make that care more effective and patient centered. We are an untapped resource. PCORI has offered a way for caregivers, including siblings like myself, to have a seat at the table. (Back to top)

The views expressed here are those of the authors and not necessarily those of PCORI.

Comments

Ronald Frank

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I suggest that you use the complete name PCORI
(Patient-Centered Outcomes Research Institute) at least once in each article. Strive for clarity. Avoid repetitive use of certain words if they can be expressed in different terms.

Sandra Finestone

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Patients reviewers are currently used within most of the research funding vehicles. They have proven to be able to provide invaluable insight within the review and even in the writing of the applications themselves. In todays research environment, not having a patient reviewer has the potential to lessen both the effectiveness and the impact of the application

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