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Suggested Citation:"Appendix A: Public Meeting Agendas." National Research Council. 2022. Realizing the Promise of Equity in the Organ Transplantation System. Washington, DC: The National Academies Press. doi: 10.17226/26364.

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Appendix A

Public Meeting Agendas

This appendix includes public meeting agendas for the committee’s first meeting (December 10, 2020), workshop (February 4–5, 2021), webinar (April 16, 2021), and listening session (July 15, 2021). These meeting agendas are listed in chronological order.

FIRST VIRTUAL COMMITTEE MEETING

Thursday, December 10, 2020

11:00 a.m.	Welcome and Opening Remarks to Public Audience KENNETH W. KIZER, Committee Chair
11:15 a.m.	Delivery of Study Charge and Q&A/Discussion with Committee Objectives: Receive study background and charge from NIH. Discuss study task with the sponsor, and determine scope of committee’s work (i.e., what is in and what is out). Clarify issues identified by the committee, and seek answers to questions. Discuss report audience and expected products.
	JONAH ODIM, Section Chief, Clinical Transplantation Section, NIAID
	Discussants: NEIL AGGARWAL, Branch Chief, Lung Biology and Disease Branch, NHLBI KEVIN ABBOTT, Program Director, Division of Kidney, Urologic, and Hematologic Diseases, NIDDK AFSHIN PARSA, Program Director, Division of Kidney, Urologic, and Hematologic Diseases, NIDDK

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Suggested Citation:"Appendix A: Public Meeting Agendas." National Research Council. 2022. Realizing the Promise of Equity in the Organ Transplantation System. Washington, DC: The National Academies Press. doi: 10.17226/26364.

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11:30 a.m.	Discussion with Committee
12:30 p.m.	Study Context and Overview of OPTN Allocation Policies BRIAN SHEPARD, CEO, United Network for Organ Sharing (UNOS) and Executive Director, Organ Procurement and Transplantation Network (OPTN)
12:45 p.m.	Discussion with Committee
1:30 p.m.	Adjourn Open Session

VIRTUAL PUBLIC WORKSHOP

February 4 and 5, 2021

DAY 1: Thursday, February 4, 2021

10:00 a.m.	Introduction and Charge to the Workshop Speakers and Participants KENNETH W. KIZER, Committee Chair Chief Healthcare Transformation Officer Senior Executive Vice President Atlas Research
	SESSION I. BIOETHICAL CONSIDERATIONS OF FAIRNESS, EQUITY, AND TRANSPARENCY
	Session Chair: Kenneth W. Kizer, Committee Chair
	Session Objectives: Discuss the bioethical considerations of fairness, equity, and transparency in deceased donor organ procurement, allocation, and distribution. Consider what the terms fairness, equitable, and transparency currently mean when applied to the deceased donor transplant system.
10:05 a.m.	Bioethical Underpinnings of a Fair, Equitable, and Transparent Deceased Donor Organ Procurement, Allocation, and Distribution System JAMES CHILDRESS Professor Emeritus, University Professor and John Allen Hollingsworth Professor of Ethics, and Professor of Religious Studies University of Virginia
10:15 a.m.	Examining the Legal Underpinnings of the Transplant System—Are There Inherent Barriers to Fairness, Equity, and Transparency? ALEXANDRA GLAZIER CEO New England Donor Services
10:25 a.m.	Discussion with Committee (20 mins)

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Suggested Citation:"Appendix A: Public Meeting Agendas." National Research Council. 2022. Realizing the Promise of Equity in the Organ Transplantation System. Washington, DC: The National Academies Press. doi: 10.17226/26364.

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	SESSION II. THE U.S. ORGAN PROCUREMENT SYSTEM Session Chair: SUE DUNN, Committee Member
	Session Objectives: Discuss OPO processes and systems that ensure fairness and equity in organ donation. Describe innovative OPO practices that have led to increased organ donation and transplant.
10:45 a.m.	Overview of the Organ Procurement Process HOWARD NATHAN CEO Gift of Life (Philadelphia)
10:45 a.m.	SUSAN GUNDERSON CEO LifeSource (Minneapolis)
11:05 a.m.	Discussion with Committee (15 mins)
11:20 a.m.	Organ Use—OPO Challenges and Approaches KEVIN O’CONNOR CEO LifeCenter Northwest (Seattle)
11:20 a.m.	RICHARD PEREZ Medical Director, Transplant Center University of California, Davis
11:40 a.m.	Discussion with Committee (15 mins)
11:55 a.m.	Panel Discussion: Innovation in the Organ Procurement Process
	Panel Objectives: Explore the role of OPOs in community acceptance of organ donation to help address inequities and disparities within the system. Discuss a range of innovative practices within OPOs to increase donations and transplants. Discuss challenges that OPOs face and potential solutions for overcoming those barriers. Moderator: SUE DUNN, Committee Member
	Panelists: JOE FERREIRA President, Association of Organ Procurement Organizations CEO, Nevada Donor Network
	ALEXANDRA GLAZIER CEO New England Donor Services

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Suggested Citation:"Appendix A: Public Meeting Agendas." National Research Council. 2022. Realizing the Promise of Equity in the Organ Transplantation System. Washington, DC: The National Academies Press. doi: 10.17226/26364.

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	DIANE BROCKMEIER President and CEO Mid-America Transplant
12:20 p.m.	Discussion with Committee (15 mins)
12:35 p.m.	Break (15 mins)
	SESSION III. TRANSPLANT CENTER OPERATIONS AND ORGAN ACCEPTANCE DECISIONS
	Session Chair: LEIGH ANNE DAGEFORDE, Committee Member
	Session Objective: Discuss the opportunities and challenges facing transplant centers, and explore what is working and not working in terms of accessing organs, considering organ offers, managing waiting lists, and optimizing the use of available organs.
12:50 p.m.	A Moderated Discussion on the Challenges and Opportunities for Improving Organ Use at the Transplant Center Level Moderator: LEIGH ANNE DAGEFORDE, Committee Member
	Panelists (5 minutes of remarks each): RICHARD HASZ Vice President, Clinical Services Gift of Life Donor Program, Philadelphia
	ALEXANDRE LOUPY Professor of Nephrology and Epidemiology Paris University
	SUMIT MOHAN Associate Professor of Epidemiology and Medicine Columbia University Medical Center
	BRIGITTE SULLIVAN Executive Director NYU Langone Transplant Institute
	KELLY WATSON Transplant Coordinator, Lung Transplant University of North Carolina
1:45 p.m.	Discussion with Committee (20 mins)

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Suggested Citation:"Appendix A: Public Meeting Agendas." National Research Council. 2022. Realizing the Promise of Equity in the Organ Transplantation System. Washington, DC: The National Academies Press. doi: 10.17226/26364.

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	SESSION IV. DATA COLLECTION AND MODELING
	Session Chair: DORRY SEGEV, Committee Member
	Session Objective: Examine the current approach to modeling proposed organ allocation policy changes (e.g., simulated allocation models), including successes and limitations, and consider new opportunities for improving organ allocation models. Moderator: DORRY SEGEV, Committee member
2:05 p.m.	The Role of Modeling in Proposed Organ Allocation Policy Changes DAVID MULLIGAN President, Organ Procurement and Transplantation Network/United Network for Organ Sharing Professor of Surgery (Transplant); Section Chief, Transplantation Surgery and Immunology Yale University
2:15 p.m.	Simulated Allocation Models and Their Strengths and Limitations Including Data Availability JON SNYDER Director Scientific Registry of Transplant Recipients (SRTR)
2:25 p.m.	Envisioning the Future—Opportunities for Improving Organ Allocation Models NIKHIL AGARWAL Associate Professor, Economics MIT
2:35 p.m.	How Well Do Organ Allocation Policies Correlate to Models—A Case Study MICHAEL GIVERTZ Medical Director, Heart Transplant and Mechanical Circulatory Support Brigham and Women’s Hospital Harvard University
2:45 p.m.	Discussion with Committee (15 mins)
3:00 p.m.	Break (10 mins)
	SESSION V. PUBLIC COMMENT PERIOD
	Moderator: KENNETH W. KIZER, Committee Chair
3:10 p.m.	Receive Comments from Individuals Registered in Advance (2 minutes each)

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Suggested Citation:"Appendix A: Public Meeting Agendas." National Research Council. 2022. Realizing the Promise of Equity in the Organ Transplantation System. Washington, DC: The National Academies Press. doi: 10.17226/26364.

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3:55 p.m.	Reflections on Day 1 and Preview of Day 2 KENNETH W. KIZER, Committee Chair Chief Healthcare Transformation Officer Senior Executive Vice President Atlas Research
4:00 p.m.	Adjourn Workshop Day 1

DAY 2: Friday, February 5, 2021

10:00 a.m.	Welcome and Overview of Day 2 KENNETH W. KIZER, Committee Chair Chief Healthcare Transformation Officer Senior Executive Vice President Atlas Research
	SESSION VI. EXPLORING DISPARITIES AND ACCESS ISSUES IN ORGAN PROCUREMENT, ALLOCATION, AND DISTRIBUTION Session Chair: JEWEL MULLEN, Committee Member
	Session Objectives: Explore what is known about inequities and disparities in deceased donor organ procurement, allocation, and distribution. Discuss which communities are affected and examine the effect of disparities on those communities. Learn about successful efforts to mitigate these disparities and inequities. Moderator: JEWEL MULLEN, Committee Member
10:10 a.m.	Inequities and Disparities in Deceased Donor Organ Procurement, Allocation, and Distribution KIMBERLY JACOB ARRIOLA Professor, Rollins School of Public Health Emory University
10:25 a.m.	The Role of Communication Dynamics in Organ Procurement, Allocation, and Distribution LAURA SIMINOFF Dean, College of Public Health Temple University
10:40 a.m.	Panel Discussion: Perspectives on Disparities and Access Issues Moderator: ELISA GORDON, Committee Member
10:40 a.m.	Panelists (5 minutes of remarks each): MARYAM VALAPOUR Senior Staff for Lung Transplantation Scientific Registry of Transplant Recipients (SRTR) Staff, Respiratory Institute, Cleveland Clinic

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Suggested Citation:"Appendix A: Public Meeting Agendas." National Research Council. 2022. Realizing the Promise of Equity in the Organ Transplantation System. Washington, DC: The National Academies Press. doi: 10.17226/26364.

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	BURNETT “BEAU” KELLY Surgical Director Dialysis Clinic Inc. Donor Services
	LILIA CERVANTES Associate Professor of Medicine University of Colorado
	AARON WIGHTMAN Pediatric Nephrologist and Bioethicist University of Washington
	KEREN LADIN Associate Professor, Public Health and Community Tufts University
11:20 a.m.	Discussion with Committee (30 mins)
11:50 a.m.	Break (20 mins)
	SESSION VII. DECEASED DONOR FAMILY PERSPECTIVES Session Chair: CHARLES BEARDEN, Committee Member
	Session Objective: Receive the perspectives of family members of deceased organ donors.
12:10 p.m.	Panel Discussion: Perspectives from the Family Members of Organ Donors Moderator: CHARLES BEARDEN, Committee Member
	Panelists: GABRIELA LANDEROS-WILLIAMS Donor Family Member
	DEANNA SANTANA Donor Family Member
	KENNETH MORITSUGU Donor Family Member
12:40 p.m.	Discussion with Committee (20 mins)
1:00 p.m.	Break (10 mins)
	SESSION VIII. TRANSPLANT RECIPIENT PERSPECTIVES Session Chair: KENNETH W. KIZER, Committee Chair
	Session Objectives: Receive the perspectives of individuals who have received a donor organ, and explore the factors that played into their decision-making process.

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Suggested Citation:"Appendix A: Public Meeting Agendas." National Research Council. 2022. Realizing the Promise of Equity in the Organ Transplantation System. Washington, DC: The National Academies Press. doi: 10.17226/26364.

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1:10 p.m.	Moderated Panel Discussion with Donor Organ Recipients Moderator: KENNETH W. KIZER, Committee Chair
	Panelists: ALEXIS CONELL Member, Community Advisory Council APOLLO Research Study
	HALA DURRAH Patient Family Engagement Consultant and Advocate, and Parent of a Liver Transplant Recipient
	RICHARD KNIGHT President American Association of Kidney Patients Transplant Recipient
	ROBERT MONTGOMERY Chair, Department of Surgery NYU Langone Transplant Institute
1:40 p.m.	Discussion with Committee (20 mins)
	SESSION IX. COSTS AND OTHER ECONOMIC FACTORS Session Chair: DENNIS WAGNER, Committee Member
	Session Objectives: Consider the economic costs of the organ procurement, allocation, and distribution systems, and determine who is paying those costs and if there are opportunities to reduce costs.
2:00 p.m.	Moderated Panel Discussion with Select Speakers Moderator: DENNIS WAGNER, Committee Member
	MARK SCHNITZLER (7 mins) Director of Outcomes Research and Quality for Transplantation Saint Louis University
	DAVID AXELROD (7 mins) Professor, Kidney, Pancreas, and Living Donor Transplantation Surgical Director, Fellowship Director, Transplant University of Iowa
	*Synthesis and Reaction: MARIO MACIS, Committee Member*
	CHARLES ROSEN (7 mins) Professor of Surgery, Division of Transplantation Surgery Medical Director, Department of Contracting and Payer Relations Mayo Clinic

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Suggested Citation:"Appendix A: Public Meeting Agendas." National Research Council. 2022. Realizing the Promise of Equity in the Organ Transplantation System. Washington, DC: The National Academies Press. doi: 10.17226/26364.

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	SARA EVE SHAEFFER (1 min) Executive Director, ESRD NCC Health Services Advisory Group, Inc.
	CHRISTOPHER ZINNER (6 mins) Managing Director Accenture Federal Services
	*Synthesis and Reaction: NEIL POWE, Committee Member*
2:35 p.m.	Discussion with the Committee (15 mins)
2:50 p.m.	Reflections on Day 2 KENNETH W. KIZER, Committee Chair
3:00 p.m.	Adjourn Workshop

VIRTUAL PUBLIC WEBINAR

Friday, April 16, 2021

11:00 a.m.	Welcome and Introduction KENNETH W. KIZER, Committee Chair Chief Healthcare Transformation Officer Senior Executive Vice President Atlas Research
	SESSION I: INTERNATIONAL EXAMPLES OF ORGAN PROCUREMENT, ALLOCATION, AND DISTRIBUTION
	Session Objectives: Discuss lessons the United States can learn from global transplant leaders about more efficient distribution, increased use, and more equitable allocation of deceased donor organs. Identify specific policies, practices, and incentives used successfully by other countries that could potentially be adapted to improve the U.S. organ transplant system.
	Questions for Speakers: Policy making: Who is responsible for policy making around deceased donor organ procurement, allocation, and distribution in your country? How are policies developed and any disagreements among stakeholders addressed? Increasing transplants: How has your country responded to the challenge of increasing the number of organs available for transplant?

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Suggested Citation:"Appendix A: Public Meeting Agendas." National Research Council. 2022. Realizing the Promise of Equity in the Organ Transplantation System. Washington, DC: The National Academies Press. doi: 10.17226/26364.

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	Allocation: How are deceased donor organs allocated among individuals on the waiting list in your country? How is equity considered in allocation schemes? Use: How are deceased donor organs determined as acceptable to use in your country? Do individual physicians and hospitals consider organ offers individually for each patient? Implementation: What were the barriers to implementing organ allocation policies in your country? What implementation barriers would you see in the United States?
	Moderator: KENNETH W. KIZER
11:10 a.m.	Lessons from Canada JOHN GILL Professor of Medicine University of British Columbia President-Elect, American Society of Transplantation
11:25 a.m.	Lessons from Israel JACOB LAVEE Director, Heart Transplant Unit Sheba Medical Center Professor of Surgery Tel Aviv University
11:40 a.m.	Discussion with Committee (20 minutes)
12:00 p.m.	Lessons from the UK GABRIEL ONISCU Director, Edinburgh Transplant Centre Consultant Transplant Surgeon and Honorary Reader in Transplantation Royal Infirmary of Edinburgh
12:15 p.m.	Lessons from Eurotransplant AXEL RAHMEL Medical Director Deutsche Stiftung Organtransplantation
12:30 p.m.	Lessons from Spain BEATRIZ DOMINGUEZ-GIL Director General Organización Nacional de Trasplantes
12:45 pm.	Discussion with Committee Members (20 minutes)
1:05 p.m.	Session Wrap-Up KENNETH W. KIZER, Committee Chair Chief Healthcare Transformation Officer Senior Executive Vice President Atlas Research

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Suggested Citation:"Appendix A: Public Meeting Agendas." National Research Council. 2022. Realizing the Promise of Equity in the Organ Transplantation System. Washington, DC: The National Academies Press. doi: 10.17226/26364.

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1:10 p.m.	Break (40 minutes)
	SESSION II: EXPLORING DISPARITIES AND INEQUITIES IN PATIENT REFERRAL, EVALUATION, AND WAITING LIST MANAGEMENT PRACTICES
	Session Objectives: Examine how patients get referred to organ transplant specialists, evaluated by specialists, and placed on a waiting list for a deceased donor organ. Explore the areas along this clinical pathway where barriers and biases exist, and discuss possible solutions to making the process more equitable.
	Questions for Speakers: Is the process of patient referral for organ transplant equitable, and if not, which populations experience adverse disparities? Where exactly in the process are patients from these populations not referred for transplants, and why? What system-level actions could be taken to prevent disparities in referrals and mitigate inequitable outcomes? Once patients have been referred to a transplant program, do similar problems occur in the process of evaluating and listing them as candidates for transplantation? Are any of the disparities and inequities in patient referral and evaluation for a transplant organ specific? What role does implicit bias play in patients having trouble gaining access to an organ transplant waiting list and actually receiving a transplant? How can such biases be addressed? How does waiting list management by transplant centers and referring hospitals and physicians affect underrepresented groups’ access to transplantation? Could particular policies and practices be adopted to manage waiting lists more efficiently and effectively and also contribute to alleviating disparities in access to organ transplant?
	Moderator: KENNETH W. KIZER
1:50 p.m.	Working Toward a More Equitable Patient Referral and Waiting List System for Kidney Transplantation AMY WATERMAN Professor in Residence, Division of Nephrology UCLA Health
2:05 p.m.	Working Toward a More Equitable Patient Referral and Waiting List System for Liver Transplantation MALAY SHAH Surgical Director, Liver Transplant Program University of Kentucky, School of Medicine

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Suggested Citation:"Appendix A: Public Meeting Agendas." National Research Council. 2022. Realizing the Promise of Equity in the Organ Transplantation System. Washington, DC: The National Academies Press. doi: 10.17226/26364.

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2:20 p.m.	Bias Associated with Allocation of Heart Transplant and Other Advanced Heart Failure Therapies KHADIJAH BREATHETT Assistant Professor University of Arizona, School of Medicine
2:35 p.m.	Discussion with Committee Members (20 minutes)
2:55 p.m.	Waiting List Management Techniques—Experience from the COIIN Project and Beyond ANDREA TIETJEN AVP, Transplant Administrative Services Saint Barnabas Medical Center
3:10 p.m.	Addressing Inequities Through Improved Waiting List Management GISELLE GUERRA Medical Director, Kidney Transplant Program Miami Transplant Institute
3:25 p.m.	Discussion with Committee Members (20 minutes)
3:45 p.m.	Session Wrap-Up and Adjourn KENNETH W. KIZER, Committee Chair Chief Healthcare Transformation Officer Senior Executive Vice President Atlas Research

VIRTUAL PUBLIC LISTENING SESSION

Thursday, July 15, 2021

11:00 a.m.

Welcome and Introductions
KENNETH W. KIZER,
Committee Chair
Chief Healthcare Transformation Officer
Senior Executive Vice President
Atlas Research

11:05 a.m.

Creating a Fairer and More Equitable System—Are There Structural Barriers Embedded in the Path to an Organ Transplant in the United States? (5 minutes each)

DONNA HANDY, Patient, Massachusetts General Hospital
ASHLEY HELSING, Director of Government Relations, National Down Syndrome Society
ROBERT HIGGINS, Director of the Department of Surgery, Johns Hopkins University School of Medicine
KELLY ISRAEL, Policy Associate, Autistic Self-Advocacy Network
JAYME LOCKE, Director, UAB Comprehensive Transplant Institute

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Suggested Citation:"Appendix A: Public Meeting Agendas." National Research Council. 2022. Realizing the Promise of Equity in the Organ Transplantation System. Washington, DC: The National Academies Press. doi: 10.17226/26364.

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	JERRY MCCAULEY, Medical Director of Transplantation Services, Thomas Jefferson University; Vice President, United Network for Organ Sharing (UNOS) BRIAN SHEPARD, CEO, UNOS SRIDHAR TAYUR, University Professor of Operations Management, Carnegie Mellon University FANNY VLAHOS, Attorney; double-lung transplant recipient; Member of the Lung Transplant Initiative and Guidelines Committee, Cystic Fibrosis Foundation JANET WEINER, Board Member, Cystic Fibrosis Foundation, Washington, DC, chapter CHARLOTTE WOODWARD, Community Outreach Associate, National Down Syndrome Society
12:00 p.m.	Clarifying Questions from the Committee
12:10 p.m.	Maximizing Public and Professional Trust—What Steps Can Be Taken to Build a More Transparent and Accountable System? (5 minutes each) DAVID GOLDBERG, Associate Professor of Medicine, University of Miami MARTIN HATLIE, President and CEO, Project Patient Care EMILY LARGENT, Emanuel and Robert Hart Assistant Professor of Medical Ethics and Health Policy, University of Pennsylvania RAYMOND LYNCH, Associate Professor of Surgery and Director of Public Policy and Community Relations, Emory Transplant Center VIRGINIA (GINNY) MCBRIDE, Executive Director, OurLegacy CONSTANCE MOBLEY, Associate Director of Liver Transplantation, Houston Methodist J.C. Walter Jr. Transplant Center BLAIR SADLER, Senior Fellow, Institute for Healthcare Improvement GREG SEGAL, CEO, Organize MARION SHUCK, President, Association for Multicultural Affairs in Transplant (AMAT)
12:55 p.m.	Clarifying Questions from the Committee
1:05 p.m.	BREAK
1:25 p.m.	Aligning Incentives—What Can Be Done to Increase the Efficiency and Effectiveness of the Organ Transplant System? (5 minutes each) CLIVE CALLENDER, Professor of Surgery, Howard University of Medicine A. OSAMA GABER, Chair, Houston Methodist Department of Surgery and Incoming President, American Society of Transplant Surgeons MICHELE BRATCHER GOODWIN, Director, Center for Biotechnology and Global Health Policy, University of California, Irvine School of Law PAUL MYOUNG, Senior Administrative Director, Massachusetts General Hospital HOWARD NATHAN, President, Gift of Life Donor Program MARTY SELLERS, Associate Professor of Surgery, Emory University; Associate Medical Director, LifeLink JANICE STARLING, Founder, All Kidney Patients Support Group

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Suggested Citation:"Appendix A: Public Meeting Agendas." National Research Council. 2022. Realizing the Promise of Equity in the Organ Transplantation System. Washington, DC: The National Academies Press. doi: 10.17226/26364.

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2:00 p.m.	Clarifying Questions from the Committee
2:10 p.m.	Increasing Rates of Organ Donation and Acceptance—What Steps Would Save More Lives of Those on the Waiting List? (5 minutes each) JENNIFER ERICKSON, Innovation Fellow, Federation of American Scientists RICHARD FORMICA, Past President, American Society of Transplantation KEVIN FOWLER, Consultant, The Voice of the Patient, Inc. KEVIN LONGINO, CEO, National Kidney Foundation JEROLD MANDE, Visiting Fellow, Tisch College of Civic Life, Tufts University MELISSA MCQUEEN, Transplant Families PATTI NILES, CEO, Southwest Transplant Alliance VELMA SCANTLEBURY, Professor of Surgery, University of North Texas Health Science Center QUIN TAYLOR, Founder, Tayloring Gratitude JANICE WHALEY, President and CEO, Donor Network West
3:00 p.m.	Clarifying Questions from the Committee
3:10 p.m.	Closing Comments KENNETH W. KIZER, Committee Chair Chief Healthcare Transformation Officer Senior Executive Vice President Atlas Research
3:15 p.m.	Adjourn