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