Patients Become Partners in PCORI Peer Review
About Us
- About PCORI
- The PCORI Strategic Plan
- Governance
- Evaluating Our Work
- Our Staff
- PCORI's Advisory Panels
- Procurement Opportunities
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Provide Input
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Past Opportunities to Provide Input
- PCORI's Proposed Research Agenda (2021-2022)
- Proposed National Priorities for Health (2021)
- Proposed Principles for the Consideration of the Full Range of Outcomes Data in PCORI-Funded Research (2020)
- Proposed New PCORI Methodology Standards (2018)
- Data Access and Data Sharing Policy: Public Comment (2017)
- Proposed New PCORI Methodology Standards (2017)
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Comment on the Proposed New and Revised PCORI Methodology Standards (2016)
- 1. Standards for Formulating Research Questions
- 10: Standards for Studies of Diagnostic Tests
- 12. Standards on Research Designs Using Clusters
- 13: General Comments on the Proposed Revisions to the PCORI Methodology Standards
- 2: Standards Associated with Patient-Centeredness
- 3: Standards for Data Integrity and Rigorous Analysis
- 4: Standards for Preventing and Handling Missing Data
- 5: Standards for Heterogeneity of Treatment Effects
- 6: Standards for Data Registries
- 7: Standards for Data Networks as Research-Facilitating Structures
- 8. Standards for Causal Inference Methods
- 9. Standards for Adaptive Trial Designs
- Peer-Review Process Comments (2014)
- Draft Methodology Report Public Comment Period (2012)
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Past Opportunities to Provide Input
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.
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.
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
<h2>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.</h2>
The views expressed here are those of the authors and not necessarily those of PCORI.
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Comments
February 21, 2018, 2:30 PM
Comment by PCORI,
February 15, 2018, 10:59 PM
Comment by Sandra Finestone,
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
February 5, 2018, 6:42 PM
Comment by PCORI,
Hi Ronald, thank you very much for your comment. It has been shared with our editorial team.
February 2, 2018, 4:13 AM
Comment by Ronald Frank,
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.
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Hi Sandra, we appreciate your comment. Thanks so much.