January 29, 2016: Patient Compensation
Jaye Bea Smalley, MPA, Engagement Officer, Patient-Centered Outcomes Research Institute
Suzanne Schrandt, JD, Deputy Director, Patient Engagement, PCORI
Lorraine Johnson, JD, MBA, CEO, LymeDisease.org
Patient Compensation: PCORI’s Compensation Framework—Considerations and Practices from the Field
Research compensation models; PCORI; Patient engagement; Stakeholder engagement
- Engaged research partners are distinct from research study participants (referred to as “human subjects” or “human research participants”). Compensation of research study participants is a separate matter and subject to review and approval by the applicable Institutional Review Board.
- PCORI’s framework guides users in the principles of partnership, one of which is the recognition that all members of the research team are valued contributors.
- Partner expertise and service are developed through community leadership, serving on committees with research professionals, designing studies, providing training, recruiting human research participants, running focus groups, drafting reports, and giving presentations.
- Compensation should reflect the partners’ level of effort, expertise, commitment, responsibility, type of work, and skills required. Compensation should be informed by principles of equity, including comparable levels of pay of other professionals with similar roles on the research team.
- Ideally, discussions about partner compensation should begin early in the design of the study so that necessary steps toward fair compensation can be implemented and budgeted for. Compensation mechanisms should be co-developed by the partners and the project team.
What ranges or levels of compensation should be considered?
Should there be geographic variability—or standardization—in partner compensation across different sites and networks?
Are there other types of compensation besides financial?
Expertise, effort, and assets should be taken into consideration when assigning a value to the partner’s contribution.
For More Information
PCORI’s guidance document on financial compensation is available at their website: http://bit.ly/1M7V2Ke.
@PCTGrandRounds, @Collaboratory1, @PCORnetwork