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National Deceased Donor Potential Study: Updates and Next Steps
Acknowledgement: The Deceased Donor Potential Study is a commissioned study funded by the Organ Procurement and Transplantation Network (OPTN) under Task 6 of the existing contract. The OPTN is supported by Health Resources and Services Administration (HRSA), Healthcare Systems Bureau, Division of Transplantation’s contract #234-2005-370011C. The content described here is the responsibility of the author alone and does not necessarily reflect the views or policies of the Department of Health and Human Services, the OPTN, or UNOS; nor does mention of trade names, commercial products, or organizations imply endorsement by the US Government.
The “Question”
What is the “true” potential for deceased organ donation in the United States?
Purpose of Study
The DDPS aims to generate more current scientific evidence that is based on rigorous epidemiologic, population, demographic, and geographic analyses of the deceased donor system for the purposes of determining the potential number of organ donors, and to determine the potential trend in that number over time.
Specific Aims: Objectives
Research Strategy
Build a unifying framework for understanding deceased donor potential, linking existing bodies of knowledge and specific research traditions that are relevant to transplantation WITH the power of transdisciplinary science approach.
Examine deceased donor potential from a complex system view.
Important Qualifiers or Clarifying Points about the Study
What the study is not:Does not include OPTN policy formation and analysis.Does not include any focus on organ allocation or
distribution.Does not include any recommendations on differing
geographic units of measure or operational approaches.Study is not focused on current understandings or
classifications typically used for compliance reasons (ECD, SCD, etc.).
Deceased Donor Potential Study: 3 Threads
DDPS : Expert Group that Informs this WorkThe Committee The SubcommitteesDDPS Stakeholder Committee is comprised of transplant and non-transplant professionals (50 members)
•Critical Care, Neuro, Trauma, Emergency Medicine•OPO Professionals (Executives, Directors of Procurement, Clinical Operations, Communications, Quality Improvement) •Transplant Surgeons and Physicians, Transplant Nurses•Other Subject Matter Experts—Geography, Epidemiology, Economics, Health Services Research, Statistics, System Dynamics, and Human Subjects Protection•Transplant Recipient and Citizen Participant•HRSA•CMS•AHA
OPO Subcommittee
Data Subcommittee
Caregiver Informant Group Subcommittee
System Dynamics Work GroupEvidence-Based Review SubcommitteeOpen Innovation Subcommittee
Deceased Donor Potential StudySubcommittee Contributions
Evidence-based Review
OPO Subcommittee
DataSubcom System Dynamics
Team
Open Innovation
Caregiver Informant
Group
Inside the Mortality Funnel: Path from All Deaths to Deceased Donors
1. All Deaths2. All Medically Suitable Deaths
3. Donors
Source: Adapted from T. Beigay, M. Reibel, & J. Rosendale, 2011.
*Note: Graphic is not drawn to scale.
Data source triangulation for Donor Potential Number
• The CIG, OPO, and Data Subcommittees will collaborate to provide three different estimates of donor potential using different databases and similar filters
• This range of estimates will also be used in the System Dynamics Deceased Donor Potential model
Data Source OptionsData Source Strengths Limitations DDPS Project Utility
National Mortality Data NVSS
Includes all deaths Not coded for all medical exclusionary criteria
Use for Deceased Donor Potential Estimate #1
National Hospital HCUP
Includes all medically relevant exclusionary criteria
Includes only deaths occurring in hospitals; No COD data
Use for Deceased Donor Potential Estimate #2
OPO Medical Record Reviews
Includes medically relevant criteria
Disparate, non-standard formats
Time required not available
OPO Call Center Records
Rich source of qualitative data
Will not provide deceased donor potential per se
Time required not available
California Mortality Data
Includes complete, identified mortality data allowing linking to UNOS database; 10-yr series
Includes only California deaths
Use for Deceased Donor Potential Estimate #3 and Gap Analyses
Donor Potential Estimate #1
1. AllDeaths
2. All Medically Suitable Deaths
3. OPTN Database
4. OPTN Donors
Custom Criteria
for Filter
Donor Potential Estimates #2 & #3
1. AllDeaths
2. All Medically Suitable Deaths
3. OPTN Database
4. OPTNDonors
Custom Criteria for Filter
Proposed Procedure for Developing and Applying Custom Criteria for Medical Suitability for Deceased
Donation
Synthesize and Operationalize
Criteria Within the Constraints of Available Data
(Data Subcommittee)
Criteria from OPO Leaders and Procurement Professionals
(OPO Subcommittee)
Criteria from Clinicians and
Caregivers(CIG Subcommittee)
Goal: Apply Custom Filters to Datasets
Donor Potential Gap Analysis: Actual v. Potential
• Build comprehensive dataset (includes NCHS and California’s Death Statistical Master files match-merged with OPTN Deceased Donor data + Census data)
• Conduct comparative donor gap analyses
• Use logistic regression models to determine probability of1. Donation if eligible2. OPTN Database - if
medically suitable3. OPTN Donor- if medically
suitable
1. AllDeaths
2. All Medically Suitable Deaths
3. OPTN Database
4. OPTNDonors
Gap 1
Gap 2
Gap 3
Validation/calibration
Donor Policy Projections
End StageChronicdisease
Waiting ListTransplantRecipients
Deaths
TransplantRate
TransplantProgram Capacity
Donor OrgansAvailable
Donors
Organs perDonor
Outcomes
Graft Failure
RiskTolerance
What if …
• What policies are most effective to increase donation and increase realization of deceased donor potential?
Successful Transplants per year
Updates
Key Milestones
Next Steps and Actions
July July/August September 2012
Acknowledgements
The Stakeholder CommitteeAlexandra K. Glazier, Esq.Betty C. Crandall, MS, RNDanielle L. Cornell, RN, BSN, CPTCDavid G. Jacobs, M.D.David W. Bosch, MSDavid H. Howard, Ph.D.Dorothy L. Faulkner, M.P.H., Ph.D.George F. Bergstrom, MA, FACHE Gerard Rushton, Ph.D.Glen Franklin, M.D.Harry E. Wilkins, III, M.D., MHCM, FACSHazhir Rahmandad, Ph.D.Howard M. Nathan, BS, CPTCJ. Elizabeth Tuttle-Newhall, M.D.James J. Wynn, M.D.Janice Whaley, MPH, CPTCJeffrey P. Orlowski, MS, CPTCJennie P. Perryman, RN, Ph.D.Jesse Schold, Ph.D., M.Stat., M.Ed.John Belcher, BS, CCEMT-P, CPTCJulie A. Mayglothing, M.D.Karen Garcia, M.S.Ed.Kevin J. O'Connor, MS,PALaurie J. Lyckholm, M.D.
Linda Ohler, MSN, RN, CCTC, FAANLori E. Markham, RN, MSN, CCRN, CPTCM. Anjali Sastry, Ph.D.Marcella Farinelli Fierro, M.D. Maria DeLauro, RN, MSN,MPAMary Kelleher-Crabtree, MS, PMP, CIP, CCRPMaryl R. Johnson, M.D.Meg M. Rogers, BSN, CPTCNikolaos T. Pyrsopoulos, M.D., Ph.D.P.J. Geraghty, EMT-P, BS, CPTCPaul K. Halverson, Dr.P.H., M.S.H.A, FACHERenee Bennett, RN, BSN, CNOR, CCTN, CCTCRichard D. Hasz, Jr., MFSRobert S.D. Higgins, M.D., MSHAStuart J. Youngner, M.D.Suzanne Lane Conrad, RN, MSThomas Mone, MSThomas A. Nakagawa, M.D.Thomas P. Bleck, M.D., FCCMTimothy L. Pruett, M.D.Richard Durbin, MBA Christopher J. McLaughlinTeresa M. Beigay, Dr.P.H. Brian Shepard
The Research TeamName and Organizational Affiliation Role on Team
Darren E. Stewart, M.S. (UNOS Research) Data Analyst, CIG Support
David A. Wagstaff, Ph.D. (Penn State) Data Analyst, CIG Support
Gary King, Ph.D., M.A. (Harvard) Co-Investigator
John D. Rosendale, M.S. (UNOS Research) Co-Investigator
Joyce D. K. Essien, M.D., M.P.H. (Emory, CDC-Retired) Facilitator
Kevin A. Myer, M.S.H.A. (UNOS CTSE) Co-Investigator
Khalid Saeed, Ph.D., M. Eng. (WPI) Co-Investigator
Kristina Wile, S.M. (Systems Thinking Collaborative) Facilitator, Project Management
Laura A. Siminoff, Ph.D., M.A. (VCU) Co-Investigator
Leah B. Edwards, Ph.D. (UNOS Research) Co-Investigator
L. Ebony Boulware, M.D., M.P.H. (Hopkins) Co-Investigator
Michael Reibel, Ph.D. (Cal Poly) Co-Investigator
Samuel Soret, Ph.D., M.P.H. (Loma Linda U) Co-Investigator
Gary B. Hirsch, S.M. (Creator of Learning Environments and MIT) Co-Principal Investigator
Karl J. McCleary, Ph.D., M.P.H. (UNOS CTSE and VCU) Principal Investigator
Center for TransplantSystem Excellence
Improving the care continuum