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Social Media & Living Donation: Opportunity With Caution
Annette Humberson LISW-S, CCTSWCleveland 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 234-2005-370011C. 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, 2014 6:33 PM
Living Donation and the Waiting List
Organ Candidates
Kidney 100,378
Liver 15,740
Lobe of Lung 1,656
Pancreas 1,194
Intestine 266
Living Donor Candidates
119, 234
Total Waiting List 122,547
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 http://www.transplantliving.org/living-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