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

2. 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

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

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

6. 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.

7. 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

8. Steering Committee
Strong Steering Committee participation from:

9. Review Committee

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

11. 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

12. 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

13. Data Collection
Activities
Modifiers
Patient Input

14. 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)

15. 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

16. 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