Concept Paper: Improving the OPTN/UNOS Committee Structure Yolanda

Concept Paper: Improving the OPTN/UNOS Committee Structure Yolanda Becker, MD Chair of the Executive Committee, OPTN/UNOS President 1

Imp lem ent Reg Me iona etin l gs Com Publi me c nt Boa Dire rd of cto rs Exe Com cuti mitt ve ee Com mitt Cha ee irs 7 8 9 20 1 20 1 20 1 Timeline 2

What is the problem and what are our goals? Current committee structure is “one-size fits all” On average, committees have 18 members, composed of: Chair & Vice-Chair 11 regional representatives 4-5 At-Large members, including (transplant hospitals, OPOs, transplant coordinators, and a tx recipient, living donor, or donor family member 3

Standing Committee Roster—Required Positions Position Chair Appointed by VP Vice-Chair Appointed by VP Region 1 Representative Recommended by Region, Appointed by VP Region 2 Recommended by Region, Appointed by VP Region 3 Recommended by Region, Appointed by VP Region 4 Recommended by Region, Appointed by VP Region 5 Recommended by Region, Appointed by VP Region 6 Recommended by Region, Appointed by VP Region 7 Recommended by Region, Appointed by VP Region 8 Recommended by Region, Appointed by VP Region 9 Recommended by Region, Appointed by VP Region 10 Recommended by Region, Appointed by VP Region 11 Recommended by Region, Appointed by VP OPO Rep (if not covered above) Appointed by VP Patient or Donor rep (if not covered above) Appointed by VP Transplant Coordinator (if not covered above) Appointed by VP 4

Example of Current Constraints Patient Affairs Committee Stated Mission: to advise the Board of Directors about patient and donor family perspectives on OPTN policies and initiatives that originate in other committees. Current Patient Affairs Committee consists of: 5 Transplant Recipients 3 Recipient Family Member 1 Donor Family Member [Other committee members consist of OPO, living donors, MDs, etc) 5

Purpose of committees? Committees are not mandated by NOTA or Final Rule. Committees add significant value by: Providing subject matter expertise Advancing diverse perspectives from tx and donation professionals, patients, living donors, donor and recipient families Getting transplant community buy-in through regional meetings, collaboration with societies, etc. 6

What is the problem and what are our goals? Build a committee structure that: 1. Increases opportunities for participation 2. Increases minority representation on the committees 3. Ensures diversity in perspectives on committees 4. Strengthens connections between the Board and committees 7

Committee Characteristics Subjects organ recovery organ transplant pediatrics operations finance (member) staffing pt care (safety) logistics long term outcomes Perspectives medicine surgery OPO administration other professions Patients: candidates, recipients donor families, and living donors ethics gender Ethnicity geography Tasks allocation policy safety requirements key data identification System evaluation Member evaluation outcomes transparency community engagement education trend identification 8

New Framework Board of Directors Subject Comms. Expert Councils 9

Subject Committees Expert Councils Chair and Vice-Chair Chairs would attend Board meeting Chair and Vice-Chair Chairs would attend Board meeting Vice-Chair serves on POC Can suggest project ideas to the POC Vice-Chair serves on POC Can suggest project ideas to the POC Assist in UNOS educational, IT, or communications projects Leaders are identified for Board service Assist in UNOS educational, IT, or communications projects Leaders are identified for Board service Have UNOS staff support Have UNOS staff support Regional representatives Set membership appointed by OPTN President No regional representatives Open membership to anybody in that community (Similar to communities of practice) Suggest ideas but do not sponsor public comment or Board proposals Sponsor public comment and Board proposals Chairs would present proposals to the Board and Board policy groups Representatives from the Board would participate on Expert councils Meet in person and online Meet online and potentially in person

Sample Committee Community Leadership (2-3) POC & Committee Chairs Regional Reps (11) Regional Meetings Reps from Expert Councils Expert Councils Other Experts 11

Expert Councils General member More open Core membership Appointed by Pres Leadership Appointed by Pres 12

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Subject Committees Heart Histocompatibility Kidney Liver/Intestine Lung Pancreas Operations Disease Transmission Organ Procurement (or Donation) Quality Improvement (MPSC) VCA Expert Councils Bioethicists Candidate and Recipient Affairs Deceased Donor Family Living Donors Minority Affairs and Vulnerable Populations OPO Executives Procurement Coordinators Transplant Administrators Transplant Coordinators Transplant Pediatric Specialists

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Specific Requests for Feedback What is your opinion of this concept? Will the proposed change in OPTN committee structure allow for greater opportunity for participation by the transplant community? Will the proposed change in OPTN committee structure strengthen your voice in the policy making process? Do the proposed expert councils and subject committees capture all perspectives needed in the policy making process? 16