Community Benefit: Data Mining for Best Utilization of Time and Resources

1. Community Benefit: Data Mining for Best Utilization of Time and Resources Tom Mone CEO, OneLegacy Kevin Myer CEO, LifeGift

2. Demographics and Mappingto Better Serve Diverse Communities:It’s All About Curiosityprepared for the Organ Donation and Transplantation AllianceDonation Perspectives ConferenceSt. Louis, October 16, 2013byThomas Mone, MS Chief Executive OfficerOneLegacy

3. Why Do We Measure? • What’s Measured Matters • In financial management • In community attitudes • In donor registration • In family authorization • In lives saved

4. What We Choose to Measure: Outcomes • Outcomes: Required Reporting for Regulators • Eligible Deaths • Eligible Donors • ECD, DCD, SCD • Donation Rates • Organs Transplanted • Research Organs What do these data tell us about our DSA, Performance, Potential, Need, Strategies, and Investment priorities? …..Not Much

5. What We Choose to Measure: Processes • Processes: Work Elements that Affect Outcomes • Transplant Centers • Organ Offer Response Times • Organ Offer Acceptance Rate • OR Arrival Timlieness • Recovery Time • Surgical Errors • Discard Rates • Processes: Work Elements that Affect Outcomes • Donor Hospitals • Referral Rates • Referral Timeliness • Brain Death Referrals • DCD Referrals • MROs • Inappropriate Mentions • Conversion Rate • OTPD • Discard Rates

6. What We Choose to Measure: Community • Donation Beliefs, Attitudes, Actions • Opinion Attitude Polls • (Gallup 90% Support, but far fewer Register) • Donor Registration Rates • (40% Register YES!, but the range is 10-70%) • Authorization and Conversion Rates • 75% Nationwide, but 55-90+% by DSA

7. Can We Learn More if We Drill Deeper ? • Who says “Yes”?...and Who Doesn’t? • Who Registers?...and Who Defers? • Where do they live? • What Ethnicity and Race are They? • Where Do They Come From? • How Long Have They Been Here? • What Do They Know About Transplant and Donation? • Are they a part of a broader community? • What's their motivation? • Do we know something they don't...about donation about their culture? • How do we contact them? • We're no longer picking the low hanging fruit, we're after the hidden branches and we need tools

8. OneLegacy digitalDonor (EDR) Organ Referral Demographics • First Name • Middle Name • Last Name • Suffix • Alias • Home Address • City • State • Zip • Citizenship Status • Active Military • Birth Country • US Residency • Donor Occupation • Date of Birth • Age • Race • Gender • Weight • Height • BMI • Social Security # • Driver’s License #

9. OneLegacy: 19 Million ResidentsLargest OPO in the US • Offices (5) • Staff numbers (280) • Transplant Centers (11) • Hospitals (215) • Coroners (7)

10. What Have We Learned at OneLegacy? • Race Matters • Language Matters More • Religion Matters Among the Orthodox, but Not the Casual Practitioner • Where You Were Born and When you Came Here Matters Most of All

11. Our Ethnic Communities:Southern California vs. the U.S.

12. Language Matters… LAUSD Languages Spoken Los Angeles Kids’ Ability to Speak English

13. OneLegacy vs. US Eligible Authorization Rate 2013

14. So, Where Do We Find This Data? OPO Race/Ethnic Distribution as Compared to US US Census QuickFacts: http://quickfacts.census.gov/qfd/index.html OneLegacy Authorization Rates by Race as Compared to All OPOs http://aopo.org/related-links-data-organ-donation-transplantation-a40

15. Beyond Authorization • What Do We Know About Waitlists and Waiting Time? • Is it a matter of OPO performance? • Is it a matter of Transplant Center acceptance? • Is it a matter of population ethnicity and immigration? • Do different regions have different populations with different disease states? • How much does Death Rate matter?

16. Demographics also influence donation and transplant rates as noted in • Regional and Hospital Death Rates directly influence donor eligibility (Sheehy et.al., 2011), and • Disease prevalence within populations and regions influences organ failure rates, organ availability rates, and wait listing (Segev et.al, 2012) • The BMI epidemic that is rife across the country and more-so among young Hispanic immigrants (Browning, et.al., 2004) • These factors affect and mitigate OPO performance in terms of organs recovered and transplanted, as well as expected eligible donors, and ultimately Conversion rate

17. Donation Rate by OPO http://srtr.transplant.hrsa.gov/annual_reports/2011/

18. Deceased Donor Kidney Donation Rates by State: SRTR Annual Report http://srtr.transplant.hrsa.gov/annual_reports/2011/

19. ESRD Distribution Across the US (www.usrds.org/2012/pdf/v2_00intro_12.pdf‎) www.usrds.org/2012/pdf/v2_00intro_12.pdf‎

20. Donation Potential is Unevenly Distributed:Due to regional death rates (AJT November 2011) 8 D/T 85% 2-3 Yrs Key Deaths/Thousand Population Donation Authorization Rate Average Kidney ABO-O Wait Time 8.5 D/T 85% 5 Yrs 6.5 D/T 80% 3 Yrs 8.5 D/T 72% 3-5 Yrs 6 D/T 72% 6-8 Yrs 10 D/T 75% 4 Yrs http://onlinelibrary.wiley.com/doi/10.1111/j.1600-6143.2011.03981.x/abstract

21. Where to Learn About Our Communites Urban Research and Similar Organizations http://www.urbanresearchmaps.org/plurality/othercitymaps.htm

22. What Factors Affect our Organ Supply?LA County Mortality Report

23. What Factors Affect our Organ Supply and Waitlist Demand? LA County Mortality Report http://publichealth.lacounty.gov/dca/dcareportspubs.htm

24. Percent Foreign Born by Region

25. Recently Immigrated Foreign Born

26. “Non-English Speakers”

27. Household Income

28. So, What Have We Learned? • Reasons to drill down into your demographics • Different populations donate at different rates • Population differences are defined by far more than race/ethnicity and foreign birth and language seem to matter more • Populations tend to cluster into neighborhoods/enclaves • Most of us tailor our approach to meet family dynamics and demographics, e.g. language, age, gender, culture, educational level, nationality, religion • Few of us tailor our Community education to focus on the same demographic criteria we address with families, but it can make a difference in messages, advertising zones, and cost

29. Now That We Know Who We are Speaking To, What Do We Do? • The Same as we have always done, but on a more micro level and in many more locales, languages, and messages. • Conduct Focus Groups of Specific Ethnic Enclaves, Educational Strata, Income Levels, and Recency of Immigration • Develop Paid Media Advertising Tailored to Specific groups • Purchase Paid Media into Specific Neighborhoods and Media • Identify, Engage, and Inspire Community, Cultural, Religious, and Ethnic Enclave Leaders

30. If you could do so, would you have different messages for: • US-born college students vs. foreign students? • First generation immigrants from a Mexican village vs. third generation Latino-Americans? • Chinese-born vs. Korean born Asian immigrants? • Christian Koreans vs. “non-religious” • Armenians vs. Croatians? • Identifying our differences, tailoring our messages and our media, and serving one family, one neighborhood, one community at a time to help them to Donate Life.