The Transplant Research and Education Center (TREC), led by Dr. Amy Waterman, began collecting stories from living kidney donors, living kidney donor transplant recipients, family and friends of recipients, and people in need of a living kidney donor in the summer of 2018, using an innovative storyteller capturing platform.
The digital library technology empowers participants to record their story anywhere, anytime, on any smartphone, tablet, or laptop. Participants receive an email invitation with a link to record a video story. Open-ended prompts guide Storytellers to topics of discussion and ensures the educational value of their narrative. Upon conclusion, the video segments automatically stitch together into one seamless story.
The digital storytelling platform has already collected more than 100 stories from living donors, recipients, allies, including those exploring the idea of donation, and some looking for a living donor. Storytellers come from diverse racial and ethnic backgrounds, geographic regions, age, and life experience. By sharing their candid personal stories, they each help to raise awareness about the need for living donors to help solve the kidney donor shortage.
The digital library serves as an introduction for those who have never heard of living donation, providing a gateway to a full suite of educational resources available at exploretransplant.org. The library is also a tool that can be used by dialysis centers and transplant programs to enhance their educational offerings.
The Living Donation Storytelling Project is a collaboration of TREC, Health Literacy Media (HLM), Terasaki Research Institute, and 501creative. Many transplant center partners have also assisted us in building the Living Donor Storytelling Project including the UCLA Kidney and Pancreas Transplant Center, the UCLA Core Kidney Program, the Medical University of South Carolina, the Mount Sinai Transplant Center, the University of Iowa Transplant Center and the John Brockington Foundation.