The Task 5 Initiative
Identifying Metrics to Support Informed Decision Making by Critical Audiences
The Scientific Registry of Transplant Recipients (SRTR) is excited to bring together representatives from various stakeholder groups to make recommendations for better metrics to support the field of organ donation and transplantation at the upcoming People Driven Transplant Metrics Consensus Conference. This conference will be held on July 18-20, 2022, at the Radisson Blu hotel at the Mall of America in Bloomington, Minnesota.
Interested in attending? Email us.
Patients, Family Members, and Other Members of the Transplant Community:
The Scientific Registry of Transplant Recipients (SRTR) is charged with developing information about the transplant system and reporting it to the US Congress and the public. SRTR’s goal is to ensure that the organs donated in the United States are used fairly and provide the greatest benefit. SRTR is holding a consensus conference this summer to consider changes and additions to the information we provide about transplant programs and seeks your input. Specifically, we want to be sure that patients with organ failure, their families, and the health care teams that provide care to them have access to information that helps them make the best possible decisions.
SRTR currently provides a variety of reports on transplant program success in getting patients through transplant and their survival afterward. We would like to know what kind of information you would like (or would have liked if you have already undergone transplant) in making decisions about your care. Thank you for considering this request.
Please fill out the form below with your feedback. All feedback will be reviewed and posted publicly (name of commenter can be withheld based upon request). Or do you have a comment you'd like to submit as an official document? Email us with the subject line "Task 5 Public Comment."
Send us a message
The Scientific Registry of Transplant Recipients (SRTR) is operated under contract from the Health Resources and Services Administration (HRSA).While many tasks are required of SRTR, HRSA established "Task 5" in September 2020 with the goal to "identify metrics to assess national transplantation system performance and support informed decision-making by critical audiences." The three main goals of the task are:
- Identify critical audiences that need information to assess organ procurement, transplant, and the procurement and transplant system.
- Identify information of interest to critical audiences.
- Develop assessments and metrics that monitor information of interest to these critical audiences, in conformance with the reporting requirements of the OPTN Final Rule.
1. Identify Critical Audiences
On March 16, 2000, the US Department of Health and Human Services (DHHS) published the OPTN Final Rule [i], which established a regulatory framework for the operation of SRTR. The Final Rule requires SRTR to "make available to the public timely and accurate program-specific information on the performance of transplant programs." [ii] The "public" is made up of many stakeholders, including but not limited to:
- Patients with end-stage organ disease who are not yet listed for transplant
- Transplant candidates on the OPTN waitlist
- Family members or caregivers of patients and candidates
- Potential living donors
- Potential living donor organ transplant recipients
- Deceased donor families
- Transplant professionals
- Transplant programs and hospitals
- Organ procurement organizations
- The OPTN
- Third-party reimbursement entities
- The federal government
During the Steering Committee meeting on April 15, 2021, members discussed the general list of stakeholders above, refining it to include:
Patients and family members
- Patients with late- or end-stage organ disease who are not yet listed for transplant
- Patients referred for transplant but not yet listed
- Patients listed for transplant
- Potential living donors
- Family members or caregivers of patients
- Deceased donor family members
- Medical professionals
- - Physicians
- - Surgeons
- - Nurses
- - Transplant coordinators
- - Quality Assurance and Performance Improvement (QAPI) staff
- - Transplant administrators
- - Transplant social workers
- - Transplant pharmacists
- Transplant programs/hospital
- End-stage renal disease networks
- Professional societies:
- - AST, ASTS, AOPO, NATCO
- - The Transplantation Society
- - American Society of Nephrology
- - The American Association for the study of Liver Disease
- - International Society for Heart and Lung Transplantation
- - American Nurses Association
- - Society for Transplant Social Workers
- Executive branch
- - Health Resources and Services Administration
- - Centers for Medicare & Medicaid Services
- - National Institutes of Health
- - US Food and Drug Administration
- - Centers for Disease Control and Prevention
- Legislative branch (Congress)
- Judical branch (ie, use of SRTR data in judical matters)
- State government/legislators
- Third-party payers
- Patient organizations
- - Transplant Recipients International Organization
- - National Kidney Foundation
- - American Association of Kidney Patients
- - American Liver Foundation
- - Juvenile Diabetes Research Foundation
- - Transplant families
- - Children's Organ Transplant Association
- - Starzl Network
- Allied organizations
- - UNOS
- - Donate Life America
- - Organ Donation and Transplantation Alliance
- - American Foundation for Donation and Transplantation
- Paired donation programs
- - National Kidney Registry
- - Alliance for Paired Donation
- - Device manufacturers (eg, ex-vivo perfusion manufacturers)
- - Pharmaceutical companies
- - Biotechnology companies
SRTR and the Steering Committee will continue to refine this list of potential stakeholders and welcomes feedback.
2. Identify Information of Interest
Once critical audiences have been identified, Task 5 requires SRTR to engage those audiences to "identify information of interest to critical audiences that need information to assess organ procurement, transplantation, and the procurement and transplantation system." SRTR plans to engage the critical audiences in three primary ways.
First, SRTR is planning to convene a consensus conference for summer 2022. The conference will bring together stakeholder representatives to hear perspectives and make recommendations of data and metrics SRTR should provide to the community. The conference is scheduled for July 18 to 20, 2022 and will be held in the Minneapolis, Minnesota area.
Second, SRTR is planning to convene patient and family focus groups before the consensus conference. Focus groups will be led by Allyson Hart, MD, SRTR senior staff for patient and family affairs. Dr. Hart is working with the Steering Committee to finalize plans for focus group recruitment and the discussion guide. The committee has recommended that recruitment for focus groups ensures a broad range of perspectives from patients, including gender, racial, ethnic, and geographic diversity, and broad representation across organ types and adult and pediatric concerns. SRTR invites the public to nominate potential participants for these focus groups.
Third, SRTR will open public comment, in which we hope to hear input from stakeholders. We will seek comment on which metrics would best meet each stakeholder's needs and recommendations for how those metrics should be constructed and presented.
3. Develop Assessments and Metrics
After the consensus conference, SRTR will begin to evaluate and implement the recommendations. SRTR will work with HRSA and the SRTR Review Committee and its subcommittees to implement the recommendations. The review committee currently has three subcommittees, which will help SRTR implement the Task 5 recommendations. The subcommittees include:
- Analytic Methods Subcommittee: Will help SRTR develop analytic methods to create any new metrics.
- Human-Centered Design Subcommittee: Will help SRTR develop new data presentations, website changes, report changes, etc., to effectively disseminate the data in a manner that meets the needs of critical audiences.
- Patient and Family Affairs Subcommittee: Will help SRTR to effectively present data and metrics to meet the needs of patients and family members.
How can I stay informed?
SRTR has established the Task 5 Steering Committee to guide it in fulfilling the objectives established by HRSA. The Steering Committee is made up of the following members representing different stakeholders:
|Jennifer Jones||Transplant patient|
|Heather Hunt, JD||Living donor|
|Sean Van Slyck||OPO executive|
|Dorrie Dils||AOPO representative|
|Richard Formica, MD (backup: Sean Pinney, MD)||AST representative|
|A. Osama Gaber, MD (backup: Lloyd Ratner, MD, MPH)||ASTS representative|
|Darren Stewart, MS||UNOS representative|
|Rachel Patzer, PhD, MPH||OPTN Data Advisory Committee|
|Zoe Stewart Lewis, MD, PhD||OPTN Membership and Professional Standards Committee|
|Sumit Mohan, MD, MPH||SRTR Review Committee|
|Shannon Dunne, JD; Chris McLaughlin||HRSA (ex-officio)|
|Dirk Slaker, MD||Third-party payers|
|Tom Duvall, MBA||CMS-CMMI|
|Valerie Caldwell-Johnson, MSN||CMS-CCSQ|
Abbreviations: OPO: Organ Procurement Organization; AOPO: Association of Organ Procurement Organizations; AST: American Society of Transplantation; ASTS: American Society of Transplant Surgeons; UNOS: United Network for Organ Sharing; OPTN: Organ Procurement and Transplantation Network; CMS: Centers for Medicare & Medicaid Services; CMMI: Center for Medicare and Medicaid Innovation; CCSQ: Center for Clinical Standards and Quality.
Task 5 will be accomplished over 5 years, from September 2020 through September 2025, with the work being broken down into four distinct phases:
- Phase 1. Planning: In 2021 and early 2022, SRTR will convene the Steering Committee monthly to plan a successful consensus conference in summer 2022. Patient and family focus groups will also meet during phase 1.
- Phase 2. Consensus conference: SRTR will engage critical audiences in a consensus conference to develop concrete recommendations for metrics to meet the needs of critical audiences and understand the information needed to support those metrics and how the metrics should be presented.
- Phase 3. Create and Report: According to the recommendations of the consensus conference, SRTR will begin to develop and report the recommended metrics. If additional data collection is required to support any new metrics, SRTR will work with HRSA and the OPTN to strategize that collection.
- Phase 4. Assess System Change: In an ongoing effort to ensure continuous evaluation and improvement, SRTR will review feedback and systematically assess the effectiveness of any changes to metrics. SRTR will convene stakeholders again in 2025 to assess the effectiveness of the changes. Going forward, SRTR will begin a three-year cycle to engage stakeholders, implement recommendations, and evaluate the effectiveness of any changes.
The following staff lead SRTR's Task 5 efforts and work with the Steering Committee to ensure the project's success:
|Jon Snyder, PhD||SRTR Director|
|Ajay Israni, MD, MS||SRTR Deputy Director and Medical Director|
|Ryo Hirose, MD||SRTR Surgical Director|
|Bert Kasiske, MD||SRTR Medical Director, Living Donation|
|Allyson Hart, MD, MS||SRTR Senior Staff, Patient and Family Affairs|
|Dorry Segev, MD, PhD||SRTR Senior Staff, Special Studies|
|David Axelrod, MD, MBA||SRTR Senior Staff, Economics|
|Cory Schaffhausen, PhD||SRTR Human-Centered Design Engineer|