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

Thank You!

Jaye Bea Smalley, MPA

Engagement Officer

jsmalley@pcori.org