patient compensation: pcori's compensation framework ......patient compensation: pcori's...
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Patient Compensation: PCORI's Compensation Framework - Considerations and Practices from the Field
Jaye Bea Smalley, MPA, Engagement Officer, PCORI
Suzanne Schrandt, JD, Deputy Director, Patient Engagement, PCORI
Lorraine Johnson, JD, MBA Chief Executive Officer, LymeDisease.org
• Top issues and concerns
• Process for developing the Compensation Framework
• Scope
• Services and expertise provided by patient partners and alignment of compensation
• Use case
• Sample model from the framework
• Discussion
Agenda For Today
• Patients, researchers and other stakeholders looking to PCORI for guidance
• Appropriate amount, consideration of assistance programs
• Partners vs. participants
• Compensation vs. coercion
• Methods and contractual vehicles for payment
Patient Partner Compensation-Top Issues
Advisory Panel on Patient Engagement
Steven BlumMarc BoutinKristin CarmanPerry CohenCharlotte CollinsRegina Greer-SmithPastor Bruce HansonLorraine JohnsonAmy KratchmanJulie MoretzKimberly McClearySally OkunDarius TandonSara Traigle van GeertruydenAnjum KhurshidBennett LevitanJimmy LinMark MishraJane PerlmutterPhilip PosnerVeronica Todaro
• PCORI Patient Engagement Advisory Panel (PEAP) developed sub-committee
• Collected information on other compensation models, both national and international
• Vetted by PEAP, PCORI staff, leadership and legal counsel
• Embedded in applications and available on PCORI website: http://www.pcori.org/sites/default/files/PCORI-Compensation-Framework-for-Engaged-Research-Partners.pdf
Process for Developing A Compensation Framework
Partnerships come in all shapes and sizes
• Guidance for compensation of patients, caregivers, & patient caregiver organizations engaged as research partners
• Reflects PCOR principle of partnership, considers circumstances and input of partners involved
• Takes into account the time and contribution of partners
• Recognizes all members of the research team as valued contributors to the research project
• PCORI expects submitted research proposals to include a plan and budget that incorporates patient compensation
• Not guidance on research subject compensation
Compensation Framework: Scope
• Valued as representatives of their communities and unique ability to engage respective communities
• Providing leadership in communities
• Chairing or serving on committees with research professionals
• Designing studies
• Providing training
• Recruiting human research participants
• Consulting, designing or running focus groups
• Drafting reports
• Giving presentations
Compensation Framework: Services and
Expertise
Everybody brings something to the table
• Compensation should reflect level of effort, expertise, commitment and responsibility, type of work, and required skills
• Should reflect role and effort contemplated in the project and extend beyond out-of-pocket expenses
• Time commitment should include preparation time
• Consideration of local prevailing wages, and national minimum wage requirements
• Compensation should be informed by principles of equity including comparable levels of pay of other professionals on the research team with similar roles
• Levels of engagement helpful when considering level of effort
• Models for compensation may align to levels of engagement and nature of activities
Compensation Framework: Aligning
Compensation to Effort and Expertise
Compensation Framework: Sample Model
• Consider advancing out of pocket expenses if circumstances warrant.
• Compensation models should be flexible; allow for opt-out based on personal or professional restrictions
• Multiple models may be considered: hourly rates, stipends, full/half day
• Compensation is considered income and subject to relevant tax laws and regulations-consult with authorities to ensure compliance
Compensation Framework: Other
Considerations
• What issues have you encountered in developing or implementing compensation of patient partners?
• What problems have you encountered?
• Promising practices?
Discussion