1. Organ and Tissue Donation – 2013 and Beyond Teresa Shafer, RN, MSN, CPTC Executive Vice President and Chief Operating Officer

2. Click to edit Master subtitle style Presentation Overview Sketch of Types of Donation – Frame up our System Controversial Metrics Donor Potential Questions

3. Organ Donation System and Process

4. Click to edit Master subtitle style Currently… Types of donation Organ – Heart, Lung, Liver, Pancreas, Kidney, Intestine Tissue – Bone, Ligaments, Tendons, Saphenous Veins, Heart Valves, Skin Corneas/Eyes Types of donors Brain-dead, heart-beating Non-heart-beating (Donation after Cardiac Death, DCD) Living, related or unrelated

5. Click to edit Master subtitle style Pathways to Donation BRAIN DEATH  Patient maintained on ventilator, heart beating  Potential organ & tissue donor  Tissue recovery follows organ donation DCD  Family initiates withdrawal of care  Patient likely to arrest within 60 minutes of extubation CARDIAC DEATH  Patient has no cardiac or respiratory activity.  Potential tissue donor  Body must be kept cool before tissues are recovered.  Recovery is within 24 hours of death

6. Click to edit Master subtitle style Currently… Roughly 28,500 organs transplanted yearly in U.S. (22,000 from deceased donors, 6,500 from living donors) Approximately 750,000 tissues transplanted yearly in U.S. Approximately 45,000 corneas transplanted yearly in U.S.

7. Current Challenges

8. Click to edit Master subtitle style Major Challenges Limited supply of brain dead organ donors (estimated 12,000 nationally per year) Demand for transplants growing faster than supply of organs Early deceleration of care, DNI, DNR, improved trauma care, etc shrinking number of potential brain dead organ donors Aging population means more “extended criteria” organs

9. Click to edit Master subtitle style National Health Crisis Waiting List ORGAN SHORTAGE! Deceased Donors Living Donors

10. Click to edit Master subtitle style 108,000 People Waiting - 150% of the average NFL Stadium

11. Click to edit Master subtitle style Overall donation rates (per 100 eligible deaths), by DSA HRSA SRTR. http://srtr.transplant.hrsa.gov/annual_reports/2011/HRSA SRTR. http://srtr.transplant.hrsa.gov/annual_reports/2011/ The SRTR is administered by the Chronic Disease Research Group of the Minneapolis Medical Research Foundation, with oversight and funding from the Health Resources and Services Administration. CY 2011

12. Click to edit Master subtitle style Organs transplanted per donor (OTPD), by DSA CY 2011 HRSA SRTR. http://srtr.transplant.hrsa.gov/annual_reports/2011/HRSA SRTR. http://srtr.transplant.hrsa.gov/annual_reports/2011/ The SRTR is administered by the Chronic Disease Research Group of the Minneapolis Medical Research Foundation, with oversight and funding from the Health Resources and Services Administration.

13. Click to edit Master subtitle style Variation in the use of ECD donors in 2011, by DSA

14. Click to edit Master subtitle style Variation in the use of DCD donors in 2011, by DSA

15. Click to edit Master subtitle style Variation in Waiting Time (months) for Deceased Transplant, 2011

16. Click to edit Master subtitle style Variation in Waiting Time (months) Heart and Lungs, 2011

17. Every Organ Every Time……. Where is the Case for OPO Volume? And what happens to OTPD, if we do make that case? Teresa Shafer, RN, MSN, CPTC Executive Vice President and Chief Operating Officer

18. Click to edit Master subtitle style Single Organ Donors – a match for a single recipient…. The decision as to whether or not to recover a single organ from a single donor should not be driven by its effect on OPO OTPD. The decision as to whether or not to recover a single organ from a single donor should not be driven by financial consideration.

19. Click to edit Master subtitle style Organ Donors 2003-2011 24% increase in organ donors, 2003 – 2007 1% increase in organ donors from 2007 - 2010 DHHS. OPTN. Collaborative Scorecard. Data for Period: September 2009 – August 2010. https:www.healthcarecommunities.org

20. Click to edit Master subtitle style US Population 2003-2010 6% increase in population, 2003 – 2009 http://www.census.gov/popest/state s/NST-ann-est.html

21. Click to edit Master subtitle style Reported Eligible Donors 2003-2011 DHHS. OPTN. Collaborative Scorecard. Data for Period: September 2009 – August 2010. https:www.healthcarecommunities.org

22. Click to edit Master subtitle style Conversion Rate 2003-2011 DHHS. OPTN. Collaborative Scorecard. Data for Period: September 2009 – August 2010. https:www.healthcarecommunities.org

23. Click to edit Master subtitle style Donors per Million 2003-2010 25% increase in d.p.m., 2003 – 2010 Donor Data from: DHHS. OPTN. Collaborative Scorecard. Data for Period: September 2009 – August 2010. https:www.healthcarecommunities.org Population data from www.aopo.org. AOPO Documents>AOPO Monthly Profile Survey Datawww.aopo.org

24. Click to edit Master subtitle style Donors & donors per million 2003-2010 24% increase in organ donors 25% increase in donors per million Donors per Million Organ Donors DHHS. OPTN. Collaborative Scorecard. Data for Period: September 2009 – August 2010. https:www.healthcarecommunities.org

25. Click to edit Master subtitle style Decreasing Eligibles and Increasing Conversion Rate Eligible Donors Conversion Rate DHHS. OPTN. Collaborative Scorecard. Data for Period: September 2009 – August 2010. https:www.healthcarecommunities.org

26. Click to edit Master subtitle style Donors & Conversion Rate 2003-2011 25% increase in organ donors 52% increase in conversion rate Conversion Rate Organ Donors DHHS. OPTN. Collaborative Scorecard. Data for Period: September 2009 – August 2010. https:www.healthcarecommunities.org

27. Click to edit Master subtitle style Decreasing OTPD with donor volume (measured in dpm) OTPD DHHS. OPTN. Collaborative Scorecard. Data for Period: September 2009 – August 2010. https:www.healthcarecommunities.org

28. Click to edit Master subtitle style Eligible Donors do not represent the donor pool Conversion rate with reported eligibles as denominator are not reliable inter-OPO (between OPOs) performance comparison metric. Conversion rate intra-OPO (within OPO) are useful to that OPO to observe current conversion rate against historical conversion rates, given that the OPO did not change its own definitions or measurement strategies. Reported Eligibles do not represent the U.S. donor pool, but we behave as if they do…… While there are other problems with the eligible definition, the first step in the wrong direction was excluding donors from the pool who were not officially pronounced dead…..

29. Click to edit Master subtitle style An Unsustainable Trend & a need for Renewed Focus 25% increase in organ donors 52% increase in conversion rate Conversion Rate Organ Donors This is the trend that is not sustainable,- for our patients or for our credibility…….. We can’t transplant conversion rate, we can only transplant organs, and sadly, a volume metric is missing from the CMS Outcome Measures. You get more of what you measure…….and there is no volume metric in the CMS outcome measures…….

30. LifeGift Metrics Jan – July, 2013

31. Click to edit Master subtitle style Conversion Rate & Potential Jan – July, 2013 compared to 2012 Conversion Rate of 71.4% in 2013, compared to a conversion rate of 79% in 2012. Applying same conversion rate to 2013 potential would yield 17 donors – 16 more donors for 2013. Conversion Rate: 9.6% decrease Donor Potential: 11% decrease 79% 71.4%

32. Click to edit Master subtitle style AA Consent Rate; African American Donors January – June 2013 No AA potential donors in 2012

33. Click to edit Master subtitle style Hispanic Consent Rate; Hispanic Donors January – June 2013

34. Click to edit Master subtitle style Caucasian Consent Rate; Caucasian Donors January – June 2013

35. Click to edit Master subtitle style OPO Productivity – VOLUME Total Organ Donors DTCP Monthly UNOS data reports; most recent time period for Collaborative Scorecard through April as of July, 2013

36. Click to edit Master subtitle style OPO Productivity – VOLUME Total Organs Transplanted DTCP Monthly UNOS data reports; most recent time period for Collaborative Scorecard through April as of July, 2013

37. Click to edit Master subtitle style Percent of Donors - SCD DTCP Monthly UNOS data reports; most recent time period for Collaborative Scorecard through April as of July, 2013

38. Click to edit Master subtitle style Percent of Donors - DCD DTCP Monthly UNOS data reports; most recent time period for Collaborative Scorecard through April as of July, 2013

39. Click to edit Master subtitle style OPPORTUNITY COST There is opportunity cost but there is great potential in recovering non-traditional donors. Everyone should have the opportunity to donate. Every withdrawal of life support and ventilatory support should be evaluated and given the opportunity to donate. Presumptive – presume death will occur in time frame suitable for donation. POTENTIAL – NON TRADITIONAL DONORS

40. Click to edit Master subtitle style TOP 24 Hospitals 2009 - 2012 Based on OPTN Data as of May 24, 2013 Of approximately 6000 acute care hospitals in US, 2265 had atleast one organ donor during this period.

41. Click to edit Master subtitle style TOP 21 Hospitals - DCD 2009 - 2012 Based on OPTN Data as of May 24, 2013 DCD Donors

42. Click to edit Master subtitle style DCD Donors – LifeGift Hospitals 2009 - 2012 Based on OPTN Data as of May 24, 2013

43. Click to edit Master subtitle style Top Pediatric Hospitals 2009 - 2012 575 Hospitals had atleast 1 Pediatric Donor in 2009 – 2012. These are the nation’s largest Pediatric Organ Donor Hospitals Based on OPTN Data as of May 24, 2013 Pediatric Donors

44. Click to edit Master subtitle style Top Pediatric Hospitals - DCD 2009 - 2012 Based on OPTN Data as of May 24, 2013

45. OPTN Deceased Donor Potential Study: Background, Early Findings and Commentary

46. Click to edit Master subtitle style DDPS Research Team NAME & ORGANIZATIONAL AFFILIATION FUNCTIONAL ROLE ON TEAM Karl J. McCleary, PhD, MPH (UNOS CTSE & VCU)Principal Investigator Gary B. Hirsch, MS (MIT)Co-Principal Investigator L. Ebony Boulware, MD, MPHCo-Investigator Leah B. Edwards, PhD (UNOS Research)Co-Investigator Gary King, PhD, MA (Harvard)Co-Investigator Kevin A. Myer, MSHA (UNOS CTSE)Co-Investigator Michael Reibel, PhD (Cal Poly)Co-Investigator John D. Rosendale, MS (UNOS Research)Co-Investigator Khalid Saeed, PhD, M. Eng. (WPI)Co-Investigator Laura A. Siminoff, PhD, MA (VCU)Co-Investigator Samuel Soret, PhD, MPH (Loma Linda U)Co-Investigator Kirstina Wile, MS (Systems Thinking Collaborative)Facilitator Joyce DK Essien, MD, MBA (Emory; CDC; Retired)Facilitator

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50. Future Directions

51. Click to edit Master subtitle style Percentage of Population > 18 Registered Donors in Texas

52. Click to edit Master subtitle style Where do we stand? Room for improvement…and gaining quickly Registrants> 18 y/o TX4,479,80019,073,56423.5% FL 7,348,60715,315,08847.9% CA 10,499,91328,801,21136.5% NY 3,320,000*15,307,10721.5%

53. Click to edit Master subtitle style StateDD CA 9,954,273 FL 7,075,534 IL 5,257,313 OH 5,213,582 PA 4,484,705 GA 4,419,720 NC 4,347,096 WA 4,161,910 VA 3,615,938 TX 3,612,525 StateDD IN3,448,333 NY3,179,754 MO3,109,700 MI3,088,837 MA2,690,667 CO2,650,000 WI2,557,891 MN2,541,433 MD2,403,255 NJ2,379,141 To 10 th and climbing quickly… Total Donor Designations, as of 3/31/13 *Estimated

54. Click to edit Master subtitle style Future Directions Increased number of donors coming from “first person consent” or registries Increased consent/conversion Increased success utilizing older donor organs Increased utilization of “donation after cardiac death” donors

55. Click to edit Master subtitle style Questions? 1.What are the different types of donors that can donate vascular organs for transplantation? 2.Approximately how many organ donors are recovered each year in the U.S.? 3.What are Hispanic and African American Authorization Rates in the LifeGift community? 4.Does registration on the Texas Donate Life Registry constitute a valid and binding donation authorization?

56. Click to edit Master subtitle style Questions? Question 1: What are the different types of donors that can donate vascular organs for transplantation? 1.Brain dead donors 2.DCD (Donation after Cardiac Death) 3.Living Donors 4.All the above

57. Click to edit Master subtitle style Questions? Question 2 Approximately how many organ donors are recovered each year in the U.S.? 1.5,000 2.8,000 3.10,000 4.15,000

58. Click to edit Master subtitle style Questions? Question 3 What are Hispanic and African American Authorization Rates in the LifeGift community? 1.50 – 60% Hispanic and African American Living Donors 2.20 – 30% Hispanic and African American Living Donors 3.10 – 20% Hispanic and African American Living Donors 4.70 – 80% Hispanic and African American Living Donors

59. Click to edit Master subtitle style Questions? Question 4 Does registration on the Texas Donate Life Registry constitute a valid and binding donation authorization? 1.No 2.Yes 3.Maybe 4.Unknown

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