Creating a Culture of Donation

Jennifer GelmanDirector, Communication

The Living Legacy Foundation of Maryland

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

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.4. development or improvement of the mind by education or training.5. the behaviors and beliefs characteristic of a particular social, ethnic, or age group: t

he youth culture; the drug culture.

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

• 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…

Year OPTN Conversion

Rate

Authorization Rate

Donors Organs Transplanted

2007 61% 50% 120 357

2008 69% 50% 119 349

2009 69% 49% 120 379

2010 76% 64% 120 383

2011 75% 63% 124 385

2012 80% 65% 142 431

What changes were implemented in 2010 to create such a dramatic change?

What the Data Tells Us

• 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 RewardsInternal communication and education

Small Changes, Big RewardsClinical 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.

Small Changes, Big RewardsLegislative• 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

• 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 RewardsTransplant Center Engagement

Small Changes, Big RewardsHospital 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

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.

• 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

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

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

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

Year Participants Teams Funds Raised

2010 388 24 $46,000

2011 1,056 68 $69,000

2012 2,003 114 $107,000

Walking the Talk: Building a culture of donation in our communities

• 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

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

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

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 registry2009 2010 2011 2012

# of recovered organ donors authorized by registry

53 56 62 77

# of recovered organ donors 120 120 124 142

Percentage of designated organ donors

44% 47% 51% 54%

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?

• 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…

Moving forward…An exampleTakeaminutesavealife.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

“Organ donation is not a medical

crisis. It is a social crisis.”

Sheryl Sandberg, COO, Facebook