Dissemination of the Donor Application: Utilizing Social Media to Identify Potential Live Organ Donors

Dissemination of the Donor Application: Utilizing Social Media to Identify Potential Live Organ Donors

Dissemination of the Donor Application: Utilizing Social Media to Identify Potential Live Organ Donors

MaineHealth, Washington University School of Medicine, Scripps Health, Yale University, Rush University Medical Center

This study utilizes a web-based application to help patients on the organ transplant waitlist communicate patient's need for a living donor via social media and provide interested potential donors the opportunity to engage with the evaluation process.

Barriers to identifying a live donor include lack of education and hesitance to initiate a conversation about live donation. For these reasons, many transplant candidates are hesitant to discuss candidate's illness and are therefore reluctant to pursue live donor transplantation. The investigators hypothesize that utilization of social media to spread awareness about candidate's illness and candidate's need for a live donor will enable many transplant candidates to successfully identify live donors. In this study, participants will use a novel web-based application, called the "Donor App", to create and share candidate's story via Facebook and other social networks to assist in the search for a live donor.

Select physicians and research staff from about 15 transplant hospitals will be given access to distribute the application to patients who the above people feel could benefit from the application. After obtaining informed consent, an approved member of the study team will enter the participant's name, contact info, and organ needed into the Donor App's secure management portal to send an email or text message with a unique and protected invitation link to the participant. Using this link the participant will be allowed to use the Donor App indefinitely.

The Donor app is a web-based application that helps transplant candidates tell the candidate's story via social media in the hopes of identifying an appropriate living donor. Sample stories created using the Donor App can be found at www.thedonorapp.com.

Number of potential live donors that come forward to the transplant center on behalf of the participant.

App utilization as assessed by number of participants with story completion and posting in the donor app

The extent of a participants story completion and posting will be recorded internally by the Donor App. The number of participants that complete stories and post will be counted to assess app utilization.

Success of the Donor App across multiple institutions will be tracked by the number of participants enrolled and invited to use the app at each institution.

Inclusion Criteria: At least 18 years of age On the kidney-only or liver-only transplant waiting list at a collaborating center Exclusion Criteria: Younger than 18 years of age Not on the kidney or liver transplant waiting list On multiple organ transplant waiting lists

Kumar K, King EA, Muzaale AD, Konel JM, Bramstedt KA, Massie AB, Segev DL, Cameron AM. A Smartphone App for Increasing Live Organ Donation. Am J Transplant. 2016 Dec;16(12):3548-3553. doi: 10.1111/ajt.13961. Epub 2016 Aug 10.

Bramstedt KA, Cameron AM. Beyond the Billboard: The Facebook-Based Application, Donor, and Its Guided Approach to Facilitating Living Organ Donation. Am J Transplant. 2017 Feb;17(2):336-340. doi: 10.1111/ajt.14004. Epub 2016 Sep 7.