1. Creating a Culture of Donation Jennifer Gelman Director, Communication The Living Legacy Foundation of Maryland

2. The Living Legacy Foundation Serves Maryland, except Charles, Montgomery and Prince George’s Counties 3. 7 million residents served 34 hospitals (3 level 1 trauma centers) 2 transplant centers; The Johns Hopkins Hospital and University of Maryland Medical Center 2012- 142 organ donors; 3.04 OTPD; 13% DCD 53% Donor Designation

3. What does it mean to create a culture of donation? Dictionary.com defines culture as: 1.the quality in a person or society that arises from a concern for what is regarded as excellent in arts, letters, manners, scholarly pursuits, etc. 2.that which is excellent in the arts, manners, etc. 3.a particular form or stage of civilization, as that of a certain nation or period: Greek culture. 1.development or improvement of the mind by education or training. 2.the behaviors and beliefs characteristic of a particular social, ethnic, or age group: the youth culture; the drug culture.

4. Where to start… With the Breakthrough Collaborative, The LLF has been working with hospital partners to build a positive culture of donation in critical areas: Routine Referrals Donor Councils Donor Management Goals (8 + Tissue is Great) Engaging Hospital Leadership

5. OPO Leadership Changes (2004) – New CEO – Changes in Governing Board Composition Transplant Center Centric » Community Centric – Medical Director Model change Transplant surgeon » Medical Intensivist/Pulmonlogist Rebuilt a frame work of trust and communication between OPO staff and transplant surgeons Where to start…

6. YearOPTN Conversion Rate Authorization Rate DonorsOrgans Transplanted 200761%50%120357 200869%50%119349 200969%49%120379 201076%64%120383 201175%63%124385 201280%65%142431 What changes were implemented in 2010 to create such a dramatic change? What the Data Tells Us

7. Hardwiring a culture of donation with LLF staff requires communication – Boards: Executive Committee, Governing, Clinical Advisory – Leadership/Management: Performance Improvement, Management Team Meetings – ALL Staff – IMPACT meeting, non-conformance review meeting, referral/authorization & clinical review meeting, tissue improvement roundtable, education committee, safety committee Small Changes, Big Rewards Internal communication and education

8. Small Changes, Big Rewards Clinical application and education Dedicated intensive trainings for LLF Family Services staff on having discussions with families (2011) DSA Action Team focused on the implementation of Catastrophic Brain Injury Guidelines (CBIGs) and standing order sets Hospital based Collaborative Learning Series engaged critical care staff in the donation process (2010 – 2012). Educated more than 500 nursing, social work and pastoral staff each year.

9. Small Changes, Big Rewards Legislative Maryland Donor Registry Act was passed and implemented in late 2009, which created the online donor registry allowing the OPOs in Maryland real- time access to donor designation information – The LLF implemented a change in language when speaking with families of designated donors. Disclosure vs. Authorization

10. Weekly collaborative call – OPO and Transplant Center staff discuss organ cases from the previous week Develop joint protocols (ex. vessel storage) Donor family correspondence guidelines/tips included in all recipient discharge packets Assist in packaging of living donor recoveries Small Changes, Big Rewards Transplant Center Engagement

11. Small Changes, Big Rewards Hospital Engagement In 2010, The LLF, in partnership with the Maryland Hospital Association, launched the Flags Across Maryland campaign which asked Maryland hospitals to raise the Donate Life flag in April to celebrate and honor the organ, eye and tissue donors in their community. – 12 hospitals participated in the first year and the list continues to grow each year. – On their own, hospitals requested to raise the Donate Life flag each time there is a donor at the hospital. Currently, 15 hospitals now raise the Donate Life flag every time there is a donor at the hospital including the three largest donor hospitals

12. Moving beyond the hospital Communication/Outreach Goals – Driving Donor Designation – Encouraging conversations about organ, eye and tissue donation – Engaging donor families as advocates This conversation has to start outside the hospital setting. We needed to begin to build a friendly culture of donation in our communities.

13. Honoring the decision not the act All families, despite the outcome of the donation process, is offered the opportunity to take part in The LLF’s Aftercare Program. In 2012, The LLF official started the Donor in Spirit Program, specifically crafted to meet the needs of families whose loved one could not become a donor for medical or social reasons. Walking the Talk: Building a culture of donation with our donor families Donor Memorial Card In 2011, The LLF began offering Donor Memorial Cards. The cards show families how meaningful we believe their decision is and that we would like to memorialize that generosity in a form they can share with friends and family at the funeral. Every family, every time, despite the outcome

14. Walking the Talk: Building a culture of donation in the MVA  98% of all donor designations in Maryland are captured at the MVA at the time of license/state ID application or renewal  Dedicated LLF staff member is the main point of contact with MVA leadership and frontline staff  Education of Branch Managers and Customer Service Representatives  Routine rounding in branches with highest traffic in LLF’s DSA  Monthly newsletters for MVA branch employees to share data and successes  “Point of Purchase” Marketing Materials  Puzzles While You Wait  Say Yes and Share it Cards  Swirls of Support

15. Walking the Talk: Building a culture of donation in our communities Data from the Maryland Donor Registry tell us Baltimore City residents are the most under-designated population in our service area – In 2012, of the no authorizations for organ donation from patients in Baltimore City zip codes, 91% were African-Americans. Research conducted in 2011, found that 33% of African Americans and 34% of Latinos living in Baltimore City, supported donation, but had not yet registered. The need for more information about the process was cited as the highest reason why individuals had not yet designated. – Faith Outreach Engaging church health ministries, health fairs, bible studies GospelFest – Reaching Out to the Community Take a Minute, Save a Life: Barber Shop Campaign Toma un Minuto, Salva una Vida: Andy Najar Torrey Smith, Public Service Announcement Health clinic partnership

16. Special Events Donate Life Family Fun Run Puts organ, eye and tissue donation and transplantation on a center stage Engages donor families, living donors recipients and supports of the cause Community Recognition Event Honors community and hospital partners annually YearParticipantsTeamsFunds Raised 201038824$46,000 20111,05668$69,000 20122,003114$107,000 Walking the Talk: Building a culture of donation in our communities

17. Hospital Donor Registry Challenge – Held during April; challenges participating hospitals to sign-up the most designated donors Participation in community outreach committees/teams Involvement at hospital sponsored health fairs, blood drives Engagement in OPO sponsors awareness events such as Donate Life Family Fun Run and Be Seen in Green Day Walking the Talk: Building a culture of donation in our hospitals, beyond the ICU

18. Walking the Talk: Building a culture of donation in our schools Maryland residents can designate their decision to become an organ, eye and tissue donor at the MVA beginning at age 15 ¾. Partner with schools in Maryland to provided education resources about the decision to become a designated donor High School Educators Tool Kit Classroom presentations Donate Life Poster Contest

19. Walking the Talk: Building a culture of donation online Social Media/Online Presence Recent reports on the state of social media find that 80% of social media users prefer to connect with brands through Facebook The LLF’s Social Media Channels Blog: Average 1,245 visits per month (475 per month in 2011) Facebook: 618 new fans in 2012; 288 average wall views per month Twitter: 282 followers Website (www.thellf.org) 2,644 average visits per month 8,969 page views per month

20. Measurable Successes Since 2010, 458,042 Marylanders have been added to the state’s registry, equating to more than12,000 new registrants a month. – State population: 4,420,632 (18+) – # of designated donors: 2,332,252 Recovered donors authorized by registry 2009201020112012 # of recovered organ donors authorized by registry 53566277 # of recovered organ donors120 124142 Percentage of designated organ donors 44%47%51%54%

21. Moving forward… Currently there are 2,332,252 residents are in the Maryland Donor Registry How do we activate these individuals to champion our brand and message while continuing to add people to registry?

22. Engage MVA leadership, managers, frontline staff and customers in our cause Build brand recognition throughout the state Continually reaffirm LLF’s commitment/ appreciate to donor families through all outreach activities Develop integrated public relations plan to include paid traditional media and social media to drive traffic to LLF branded websites Develop and execute media relations outreach (paid and unpaid) Moving forward…

23. Moving forward… An example Takeaminutesavealife.org Allow direct access to the Maryland Donor Registry Ability to send emails to friends and family to share why they are supportive of the cause Outlines a sample of ways people can ‘act now’ for our cause Opportunity to feature donation and transplantation stories Provide a visible outlet to recognize/engage hospital and community partners

24. “Organ donation is not a medical crisis. It is a social crisis.” Sheryl Sandberg, COO, Facebook