As part of National Donate Life Day, the Transplant Research and Education Center (TREC) at UCLA will launch the Living Donation Storytelling Project to spread the word about real life donor experiences and those in need of transplants. Specifically, in order to help spread awareness of kidney disease and educate individuals on how to donate, this digital library will engage individuals around the world to share their stories starting April 12, 2019.
Approximately 15 percent of the U.S. population is affected by some stage of kidney disease. A kidney transplant can improve a patient’s health, extend their life, and eliminate the need to remain on dialysis. Currently, there is a kidney shortage, and while 95,000 Americans are on the wait list, annual kidney donations only meet five percent of that need.
The biggest hurdle is educating individuals on how to improve access to living donor kidney transplants among minority populations.
Research has indicated that sharing one’s personal story is an effective way to promote health education. The Living Donation Storytelling Project, led by Amy Waterman, an expert in transplant research and education, hopes that by capturing digital narratives via social media, she can provide an effective and memorable education outlet about how to donate.
“People have a lot of questions about living kidney donation since it involves two people, one donating a kidney to another,” says Waterman. “It’s often better to learn from others who have gone through it personally.”
The technology allows participants to record their story to any smartphone, laptop, or tablet. Open-ended prompts help guide a person’s story where they can discuss topics upon their choosing. Then, the video segments are automatically stitched together into a seamless story and kidney patients can post their stories.
“We want everyone to see themselves represented in this library,” she adds.
So far, the digital storytelling platform has more than 100 stories from living donors, recipients, and allies, and includes those interested in the idea of donating and those looking for a living donor.
They hope overtime the library will continue to grow and impact individuals from all over the world.