Rick Fowler, MBA Project Consultant Association of Organ Procurement Organizations

1. AOPO Potential Donor Study: Current OPO Practice in Identifying Potential Donors Beyond the Definition of Eligible Rick Fowler, MBA Project Consultant Association of Organ Procurement Organizations Community of Practice Action Conference October 15, 2014

2. Agenda • Background/history on organ donor potential • AOPO Potential Donor Study • Member Survey Results • Early Data Collection • Next Steps

3. Challenges Across the Nation: Donors, Transplants and Patients Waiting 123,178 waiting list candidates as of 08/05/2014 Based upon OPTN year-end data provided on 08/05/2014. This work was supported in part by Health Resources and Services Administration contract 234-2005-37011C. The content is the responsibility of the authors alone and does not necessarily reflect the views or policies of the Department of Health and Human Services, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government.

4. Early Estimates of US Donor Potential

5. Death Record Review – AOPO Form

6. Early 2000s - HRSA Collaboratives

7. Focus: More Donors & More Transplants Collaborative Starts Here

8. Imminent & Eligible • Eligible – Common denominator for measuring and reporting “Potential” • Imminent – the next layer of the onion – might become Potential or “Potential Potential”

9. Initial Eligible Death Numbers fit within the Ranges Established by Earlier Estimates of US Donor Potential

10. Eligible Deaths

11. Donors from Eligible Deaths(Non-DCD & <71 years)

12. Conversion Rate(Donors: Non-DCD & <71/Eligible Deaths)

13. Eligible Deaths, Donors (Non-DCD, <71), and Conversion Rate

14. Deceased Organ Donors in the US 8268 8143 8085 8126 8017 7989 8022 7943 7593 7150 6457 6190

15. Additional Donors (From Patients Outside of Eligible Deaths)

16. Breakdown of Additional Donors

17. AOPO Member Survey

18. AOPO Member Survey • Widely recognized that the Eligible definition does not capture all “Potential” Donors • AOPO conducted a survey to better understand what OPOs are currently doing • 20 Question Survey distributed July 2014 • Understand if OPOs are collecting data on Potential Donors Beyond Eligible, • And if so, what are they collecting?

19. Three Major Categories of Potential

20. AOPO Member Survey Results 58 (95%)

21. AOPO Member Survey Results 58 55 (95%) (93%)

22. AOPO Member Survey Results 58 55 51 (95%) (93%) (92%)

23. AOPO Member Survey Results 58 55 51 51 (95%) (93%) (92%) (92%)

24. AOPO Member Survey Results 58 55 51 51 51 (95%) (93%) (92%) (92%) (82%)

25. Three Major Categories of Potential

26. OPO Upper Age Limits (in years) for the 3 Major Groups of Potential: Declared Brain Dead, Consistent with Brain Death, and DCD Number of OPOs

27. OPO Upper Age Limits (in years) for the 3 Major Groups of Potential: Declared Brain Dead, Consistent with Brain Death, and DCD Number of OPOs

28. OPO Upper Age Limits (in years) for the 3 Major Groups of Potential: Declared Brain Dead, Consistent with Brain Death, and DCD Number of OPOs

29. OPO Upper Age Limits (in years) for the 3 Major Groups of Potential: Declared Brain Dead, Consistent with Brain Death, and DCD Number of OPOs

30. Breakdown of OPO Time Limits (in minutes) from Extubation to Asystole for Potential DCDs

31. Three Major Categories of Potential

32. AOPO Member Survey Results 58 55 51 51 51 (95%) (93%) (92%) (92%) (82%)

33. Number of OPOs Tracking these Outcomes within each of the 3 major groups of Potential: Declared Brain Dead, Consistent With Brain Death, and DCD

34. AOPO Member Survey Results 58 55 51 51 51 (95%) (93%) (92%) (92%) (82%)

35. Number of OPOs Tracking these Outcomes within each of the 3 major groups of Potential: Declared Brain Dead, Consistent With Brain Death, and DCD

36. AOPO Member Survey Results 58 55 51 51 51 (95%) (93%) (92%) (92%) (82%)

37. Number of OPOs Tracking these Outcomes within each of the 3 major groups of Potential: Declared Brain Dead, Consistent With Brain Death, and DCD

38. Number of OPOs Tracking these Outcomes within each of the 3 major groups of Potential: Declared Brain Dead, Consistent With Brain Death, and DCD

39. Preliminary 2013 Data from 11 OPOs

40. Preliminary 2013 Data from 11 OPOs 2227

41. Preliminary 2013 Data from 11 OPOs 2227

42. Preliminary 2013 Data from 11 OPOs 3623 (+1396) 2227

43. Preliminary 2013 Data from 11 OPOs 3623 (+1396) 2227

44. Preliminary 2013 Data from 11 OPOs 4706 (+2479) 3623 (+1396) 2227

45. Preliminary Aggregate Data from 11 OPOs2013

46. The Impact of Potential Donor Data -“It has provided an excellent way to expand our hospitals perspective on donation potential besides the brain dead opportunities.” -“It opened our eyes to what our real potential donor population was and also showed us how under performing we really were.” -“It adds a level of accountability and consistency by giving these patients a label…it validated them and uncovered countless opportunities to study various aspects of the donation process. We have shared this new data with all of our hospitals and it is standard on our dashboards. The hospitals have subsequently increased their accountability for every opportunity, every time…it lifts the veil on how they are actually performing.”

47. Key Points • Most OPOs are collecting data on Potential Donors Beyond the Definition of Eligible • While there is local variation in Methodologies and Definitions, there are also a lot of similarities (good starting point) • Preliminary data indicates a significant number of Potential Donors Beyond Eligible

48. Next Steps • Collect more detailed data from all participating OPOs to determine the size and nature of the donor pool beyond the definition of Eligible. • Examine similarities and differences in definitions and methodologies. How close are we to a common approach? • Help inform policy discussion around Total Potential on the local and national levels. • Leverage local performance improvement efforts with hospital partners based on Potential Donor data.