- 2023 Annual Meeting
- The PCORI Strategic Plan
- Clinical Effectiveness and Decision Science
- Dissemination and Implementation
- Evaluation and Analysis
- Healthcare Delivery and Disparities Research
- PCOR Infrastructure & Innovation
- Our Vision & Mission
- Financial Statements and Reports
- The PCORI Strategic Plan
- Board of Governors
- Methodology Committee
- Authorizing Law
- Evaluating Our Work
- PCORI's Advisory Panels
- Procurement Opportunities
Past Opportunities to Provide Input
- Stakeholder Views on Components of 'Patient-Centered Value' in Health and Health Care (2023)
- 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)
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)
- Past Opportunities to Provide Input
Patients, caregivers, and their advocates provide invaluable contributions to activities both here at PCORI and in the studies we fund. In fact, we require that patients and other healthcare stakeholders be partners in the research team, designing and conducting the projects that we support. This new collaborative approach introduces opportunities to redefine the way research is done, anchored in the concept of partnership as described in the PCORI Engagement Rubric.
One partnership issue—something we’ve heard a lot about from patients and researchers alike—is how to recognize the value of the time and efforts patients offer. Previously, PCORI had advised that patients’ contributions as true research partners be recognized accordingly. Now we are excited to provide a Framework on Compensation, created by the Advisory Panel on Patient Engagement in collaboration with PCORI staff that we hope will provide additional helpful guidance.
Members of PCORI’s Engagement team and of the advisory panel searched extensively for existing payment or compensation models but found nothing that squarely fit our needs. Many of the current models were focused on payment for research participants rather than research partners. Other models were adapted from fields other than research.
Ultimately, we decided that we needed to develop a new framework. After much dialogue and hard work, we are happy to provide this tool to our applicants and other members of the PCOR community.
The new document provides a framework for thinking about financial compensation of research partners who are patients, caregivers, or representatives of patient or caregiver organizations. We expect that any research proposal submitted to PCORI will include a plan and related budget for compensating such partners. Although the new framework does not provide specific direction on payment amounts or modes of payment, it outlines factors to consider when budgeting. It illustrates how the nature and amount of compensation should reflect the circumstances and contributions of the research partners.
We hope you find this framework interesting and useful, and we’d appreciate your comments on how we might improve it. Please contact us at [email protected].
August 13, 2015, 8:53 PM
Comment by Katie Wilkes,
Thank you for creating and sharing this framework! As project director on a Pipeline to Proposals award, this topic comes up frequently. Being able to define our level of engagement on the continuum from contributor to collaborator has been very helpful in making decisions about compensation for patient research partners. I'm glad to finally have "official" guidance from PCORI that I can share with my academic collaborators next time we develop a project budget.
July 17, 2015, 12:51 AM
Comment by Heather Becker,
Glad to see you address this so flexibly. Collaborators' time should be valued as much as those of other members in a research team.
July 16, 2015, 7:17 PM
Comment by Mary Julius,
I am a DCCT / EDIC participant. For over 30 years, I have remained focused on helping answer key questions which have framed current diabetes medical and educational strategies and protocols. Dr. Saul Genuth referred to all participants as investigators, stating that without our efforts, there would be no results. The partnership forged between most DCCT / EDIC participants is the result of recognition and respect. Free parking, coffee and lunch have always been adequate financial compensation.
July 16, 2015, 6:37 PM
Comment by Greg Simon,
The clear distinction between research partners and research participants is much appreciated. Some members of our research team are "experts by experience" and some are "experts by education". Both types of expertise have value, and both should be compensated fairly.
What's Happening at PCORI?
The Patient-Centered Outcomes Research Institute sends weekly emails about opportunities to apply for funding, newly funded research studies and engagement projects, results of our funded research, webinars, and other new information posted on our site.