A Smartphone App for Increasing Live Organ Donation

Abstract

The incidence of live donor transplantation has declined over the past decade, and waitlisted candidates report substantial barriers to identifying a live donor. Since asking someone to donate feels awkward and unfamiliar, candidates are hesitant to ask directly and may be more comfortable with a passive approach. In collaboration with Facebook leadership (Facebook Inc., Menlo Park, CA), we developed a mobile application-an app-that enables waitlisted candidates to create a Facebook post about their experience with organ failure and their need for a live donor. We conducted a single-center prospective cohort study of 54 adult kidney-only and liver-only waitlisted candidates using the Facebook app. Cox proportional hazards models were used to describe donor referral on behalf of candidates using the app compared with matched controls. The majority of candidates who used the app reported it to be "good" or "excellent" with regard to the installation process (82.9%), readability (88.6%), simplicity (70.6%), clarity (87.5%) and the information provided (85.3%). Compared with controls, candidates using the Facebook app were 6.61 times more likely to have a donor come forward on their behalf (p < 0.001). The Facebook app is an easy-to-use instrument that enables waitlisted candidates to passively communicate with their social network about their need for a live donor.

Strategies for Increasing Knowledge, Communication, and Access to Living Donor Transplantation: an Evidence Review to Inform Patient Education

“…29 Compared to matched controls, patients using the app were nearly 7-times as likely to have a potential donor come forward on their behalf within 10-months after enrollment. [Figure 8]…”

The promise of organ and tissue preservation to transform medicine

“…Having enough organs and tissues to meet public health needs has been the subject of extensive efforts in science, medicine, and public policy aiming to increase organ donation 13,14 , improve donor organ utilization 15–18 , and gain the understanding needed to engineer laboratory-grown tissues 19 , bio-artificial organs 20,21 , and ‘humanized’ animal donor organs for transplantation 22,23 . The success of these efforts is intertwined with meeting the second challenge: preserving organs and tissues during procurement (or manufacturing), storage, transport, and other steps of the supply chain in order to meet logistical needs.…”

Decision Aids to Increase Living Donor Kidney Transplantation

“…A smartphone app, DONOR, was developed in line with IPDAS development guidelines and in collaboration with Facebook, to allow the transplant candidate to comfortably and indirectly share their narrative [47] through a series of prompted questions. Similar to other Facebook apps focused on organ donation [88], DONOR includes links to educational resources on transplantation that have been vetted by transplant ethicists.…”

“…In a single-center, prospective cohort study of the DONOR app, 54 adult kidney-only or liver-only waitlisted patients created and posted their patient stories on Facebook. In total, the Facebook posts generated >400 of ‘likes’ and shares within 1 month of the initial session, and 18 potential live donors contacted the transplant center on behalf of the participants, significantly more than their matched controls [47]. …”

“…The IPDAS guidelines state the development process of decision aids should consist of multiple field tests and revisions, ultimately leading to distribution [30]. While six (54.5%) decision aids communicated their decision aid development process [45–47, 51, 59, 79], repeated field tests, revisions, and evaluations are needed to determine the long term impact of the LDKT decision aids. Investigators should build into their grant applications the need for additional testing, and funders should support such diligence in decision aid development.…”