Fair Market Value Calculator - What’s on the horizon PFMD Board Meeting May 2019

Connecting separate fair market compensation work streams for global minimum coherence Fair market compensation survey conducted to patients by WECAN in 2018 PFMD expanded WECAN’s survey to all stakeholders in Q1 2019, results in Q2 FMV project initiation by NHC in 2018 Expected completion in Q3 2019 EFPIA Patient Think Tank in 2018 FMV project Survey to patients Guiding principles

FMV Calculator Project Update Marc M. Boutin, JD MAY 23, 2019

Project Overview Calculator for compensating patients and patient groups Contract templates Conflict-of-interest and privacy principles

Collaboration Ensuring Continuity between the NHC, PFMD and European Partners: Nicholas Brooke is serving on the project team and the Steering Committee The NHC Project leverage the work of MPE and WECAN including: activities survey, contract templates, existing principles, etc.

Timeline Activities Jan Feb Mar Apr May June July Aug Sept Oct Project Launch   Steering Committee Meeting Contract Award Data Collection Project Review Committee Input Draft FMV Inputs Adapt COI and Contract Templates Revise FMV Calculator Finalize FMV Calculator Launch Final Deliverables

Steering Committee Strong Steering Committee participation from:

Review Committee

Ankura/ Navigant Ankura Julie DeLong, CFA, CVA Sara Askew, CFA Briana Gordon Andrew Willis Navigant Ann Beasley, JD Casey Horton

Data Collection Who? Patient groups Industry Others with significant experience in patient engagement/compensation How? Conduct interviews (40 complete with 15 more scheduled) Targeted consultation on FMV inputs

Data Collection What? Qualitative data that describes sponsor-patient engagement Related documents (contracts or internal policies) When? Interviews complete by end of May 2019 Steering Committee calls occurring on a monthly basis Review Committee input between June and July

Data Collection Activities Modifiers Patient Input

Data Collection “Modifiers” Activities Activity Mode Type of Patient Amount of time Additional Burdens Other modifiers Interview Telephone Patient (with condition) Hours Childcare needed Local travel (<1 hour) Focus Group participant In-person Patient (without condition) Days Transportation needed Short distance travel 1-2 hours Consultant Paper Online forum patient Caregiver support needed Very long distance travel (>6 hours) Presentation (Testimonial) Verbal Co-Investigator Risk (e.g., adboard for DSMB) Panel Participant Online Patient group Audience size (small group) Presentation (Keynote) Patient expert/representative Audience size (large group) Survey completion (already created) Audience size (conference) Survey of membership Inconvenience (high) Reviewer Inconvenience (medium) Advisory Board participant (ad hoc)

Patient-friendly Contract Templates Phase 2 – June/July 2019 Conflict-of-Interest Principles and Privacy Principles Patient-friendly Contract Templates Adapt for US setting Create standardization across all activities. Review the principles developed in Europe to assess any applicable laws or regulations that need to be integrated Adapt for US setting Simplify and standardize the process for patient and patient groups Review templates to discuss nature/scope, evaluating any legal differences

Timeline Activities Jan Feb Mar Apr May June July Aug Sept Oct Project Launch   Steering Committee Meeting Contract Award Data Collection Project Review Committee Input Draft FMV Inputs Adapt COI and Contract Templates Revise FMV Calculator Finalize FMV Calculator Launch Final Deliverables