Social Media & Living Donation: Opportunity With Caution Annette Humberson LISW-S, CCTSW Cleveland Clinic Liver Transplant Team Social Work Former Member UNOS Patient Affairs Committee (PAC) September 11, 2015

Acknowledgment This work was supported wholly or in part by HRSA contract C. The content is the responsibility of the authors alone and does not necessarily reflect the views or policies of the Department of HHS, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government

“Would you use the internet/Facebook, etc to find a living donor?”  Nothing mentioned about it anywhere in UNOS policy – except that “it’s not recommended”  No direction to professionals about how to answer Where we started…

 Provide a historical perspective on the growth of solicitation for living donors using public venues  Review the potential risks and benefits of public solicitation using public forums, including social media  Identify changes that could support transplant programs and transplant professionals in managing donation in a social media environment  Introduce resources developed by UNOS related to social media and living donation Goals

The U.S. Organ Shortage

 May 8, :33 PM Living Donation and the Waiting List OrganCandidates Kidney100,378 Liver15,740 Lobe of Lung1,656 Pancreas1,194 Intestine266 Living Donor Candidates 119, 234 Total Waiting List122,547

 comprises 40% of all US kidney transplants)  Could narrow this gap  Rates of live kidney donation have declined in recent years  Shift from biologically related donors to biologically unrelated Live-Donor Kidney Transplantation

 Solicitation for donors is not new  Church Bulletin Boards  Newspaper ads  Bill Boards  Flyers  Letters to Family  Discussions around the kitchen table Nothing New

Sandwich Board Appeal  Larry Swilling, Anderson, SC  Found donor for wife and 125 other people after one year of walking with sandwich board

 Jim Gorbunow, Cottage Grove, MN  Found donor… Snow Kidney Appeal

 Reluctance to have the conversation  Financial risks  Health risks  Lack of long term outcome data Barriers to Living Donation

 Increased Exposure  No longer local, and extended circle  Potential for national and even international exposure  Potential for social, cultural and even value differences  Increased risk for donors and candidates Increasing the Ask

 Sites dedicated to finding altruistic donors  Social Networking sites, e.g. Facebook and Craig’s List  Personal webpages or blogs Today’s Landscape

 Pages seeking living kidney donors  91 pages met inclusion criteria  the mean age of potential recipients was 37 (range: 2– 69);  88% were US residents. Facebook Study

 37 percent of these pages were created by the potential recipient,  32% by other family members or friends.  31% by the son or daughter of the potential recipient, Page Initiation

 the individual’s photograph (76%),  blood type (64%),  cause of kidney disease (43%),  location (71%).  age (33%),  Dialysis requirement (44%),  history of transplant (14%),  14% provided a link to a personal Web site,  25% mentioned the ability of family/friends to donate. Posted Information

 6% mention risk of donation  12% mention the cost of donation  10% of pages asked people to sign up for organ registries  17% asked for monetary donations  For donor or recipient Other Data

 Thirty-two percent of pages reported having potential donors tested,  10% reported receiving a live-donor kidney transplant.  Those reporting donor testing  shared more potential recipient characteristics,  provided more information about transplantation,  and had higher page traffic. Results

 Beauty Contest Effect  Allows donors to choose based on personal bias, social status or other factors related to the individual  Disadvantages the ‘unplugged’  What about those who are not ‘tech savvy’  What about those who are seriously ill who do not have an advocate in their social network  Alternate Allocation – not, necessarily based on ethical principals  Not medically based Challenges to Justice and Equity

 Increased number of Requests from the UNOS Patient Services Line  Information on finding  Becoming altruistic living donors Reports of requests by all transplant professionals on the Committee  Agreement among patients and professionals:  Patients lack information on safe use of social media  ‘Desperate people take desperate measures’  Transplant professionals need resources to support them in social media discussions Committee Discussion

 Develop resources to  Support patients and families in making safe and informed decisions regarding the use of social media  Support transplant professionals in social media discussions Encourage discussion about social media use between patients and transplant professionals  Increase discussions regarding the use of social media SAFELY if that is their choice  For solicitation of living donors  For transplant information Committee Goals

Developing related resources

 Increase in questions and reports of use of social media for donor solicitation and information  Volume of responses from living donor solicitation may overburden programs  Sense of being ill-prepared  Liability concerns  Interest in resources Responses

Developing related resources

Promoting new resources

 · 2533 total pageviews to donation/facts/discussing/ donation/facts/discussing/  · 2125 unique pageviews  · Average time on page: 1:59  · Top referrers: direct, google, transplantpro.org, umm.edu, unos.org, bing, donatelife.net, health.mos.gov, facebook, kidney.org, organdonor.gov Update Data from 1/1/14 – 4/30/15

Opportunity: Increase Transplants  Increased opportunity for education  Increased opportunity to promote transplantation in general  Increased opportunity for living donation  Increased discussion regarding transplantation and donation (living and deceased) among the general population

 Makes it easier to approach living donors by asking them online versus in person  Ability to rapidly disseminate information over great distances  Enlarges the social network  Beyond current social network  Reconnect with lost friends and associates  Encourages new connections Opportunity: Increased Awareness

 Safety in all donor solicitation  Awareness of loss of privacy  Potential for coercion  Potential exploitation  Disadvantaging the “Unplugged”  Unregulated and unmonitored  Potential for distribution of incorrect or misleading information Cautions - Patients

 Uncharted territory  Unregulated and unmonitored  Lack of policy or accepted processes  Administrative management  Protection of Health Information  Ensuring Patient Safety  Program and individual liability Challenges for Professionals

 UNOS Metrics indicates the patient community’s level of interest in this subject  Transplant professionals indicate a need for:  Discussion regarding social media within programs  Standardized processes and language with programs  Making Resources Available  Informs online discussions  Improves accuracy of information  Opportunities to create new methods for having living donor discussions  Resource availability Conclusions

 Increased safety  Greater peace of mind  Support with ‘The Ask’  More open dialogue between patient and professional  Increased feelings of empowerment and control of their own care  Better resources  More transplants occur For Patients

Discussion