The Patient-Centered Outcomes Research Institute (PCORI) is a unique organization that, as its name implies, engages patients in all its work. One aspect of that work is peer review, which is traditionally the bastion of scientists and academics. PCORI peer review is different because it includes patient peer reviewers who bring the knowledge and perspectives acquired through their own experiences to ensure the quality and usefulness of PCORI’s research findings.
December 2020 marks the four-year anniversary of patient peer review of PCORI-funded research reports. As one of the first US institutions to include patients in the peer review of scientific publications, PCORI has encountered challenges, but more importantly, we have many successes to celebrate. Foremost, since the inception of the PCORI Peer Review Program, a patient peer reviewer has provided insights and recommendations on more than 98 percent of PCORI-funded research reports.
Peer review—independent assessment by recognized experts—is central to the research process and to PCORI’s goal of providing research results from our funded studies to everyone who could use them. As a contractor with PCORI managing our peer-review process for research reports, Oregon Health and Science University (OHSU) fulfills one of our main goals of patient engagement by ensuring that patient peer reviewers bring their voice to the review of these reports.
The PCORI Patient Peer Review Editorial Board, established in 2018, is a group of the best and most active patient peer reviewers that guide these efforts. With critical input from the editorial board, the OHSU Editorial Office has revised the patient peer-review form to elicit more patient-specific, constructive, and operational feedback; updated the online patient peer-reviewer training to include more interactive components; and developed a process for assigning well-matched, proficient patient peer reviewers to reports that require a rapid turnaround.
Patient peer reviewers have expressed genuine excitement to be included in the process. Many are grateful for the opportunity to review, and they are even more committed to patient peer review after participating.
More than 100 patient peer reviewers have accessed the PCORI online patient peer-reviewer training since 2017, while 67 patient peer reviewers have reviewed two or more PCORI-funded research reports.
Compared to scientific and other stakeholder reviewers, patient peer reviewers have the highest rate of accepting invitations to review and the lowest rate of "dropout" (i.e., failing to complete a review) once they have agreed to review. They also complete their reviews in the shortest amount of time.
We thank all the patients, caregivers, and patient advocates who have been a part of the first four years of PCORI Patient Peer Review. They have contributed to PCORI’s mission of patient-centeredness and patient inclusion in the research process, and their insights have helped hundreds of authors revise their research reports to be more meaningful and useful to patients and caregivers.
Looking Forward to 2021
The upcoming year is going to be a busy one for PCORI Peer Review. PCORI will start reviewing the first batch of large pragmatic trials that focus on the effectiveness of interventions in real-world clinical settings, as well as a significant cohort of COVID-19 research enhancement projects. We need a diverse group of patients and patient stakeholders (caregivers and patient advocates) to join us in peer review of PCORI’s patient-centered, comparative clinical effectiveness research.
PCORI provides online training, one-on-one support, and a small honorarium to its peer reviewers. For more information about peer review, please visit our peer review pages and sign up to become a patient peer reviewer by completing the application here.
After my mother succumbed to chronic diabetes in 2012, I—as a retired non-health professional patient stakeholder—was excited to bring my voice to the national patient and stakeholders’ council of a five-year health research project funded by PCORI and the National Institute on Aging in 2014. Shortly thereafter, I became a PCORI Ambassador and patient peer reviewer.
Patient engagement in the peer-review process provides a place where the patient’s voice can be partnered in a meaningful way with that of other stakeholders to review PCORI research reports before they are published. For example, I review the entire report, but unlike researchers and clinicians, I focus on whether there is evidence of meaningful patient engagement throughout the research process and make an assessment of the reported health outcomes and benefits and their relevance to the target patients/caregivers.
I also assess whether the research results contribute to improved health research overall, and I notify the editors of any harms, risks, or biases to the participants that I may ascertain. Finally, because I provide a lay perspective on the process, the readability of a report is important to me to ensure that the report will be meaningful to patients, caregivers, and the public. Thus, my review may include a critique of the text for flaws of a substantive and/or editorial nature.
If patients, healthcare professionals, and researchers continue working together throughout the peer-review process, so much more can be accomplished toward improving the quality, relevance, and moral and ethical values of health research.