Kidney Transplantation 2017 Development of the UNOS Kidney Transplant Learning Center

The Rogosin Institute’s roundtable event

In December 2016, 25 people, including researchers, nurses, doctors, business professionals, non-profit leaders, health literacy and media specialists, legislators, and individuals affected by kidney disease and kidney failure, gathered in New York City for The Rogosin Institute’s Transplant Roundtable. The focus was on organ donation and access to transplantation, and the goal was the generation of new ideas and action plans to increase the number of registered organ donors, increase kidney transplants, and improve health outcomes and quality of life for individuals with kidney disease.

Roundtable participants coalesced around paradigm-shifting ideas and strategies to increase the number of people benefiting from kidney transplants. The group agreed that achieving this goal requires improving transplant advocacy and education outside of transplant centers, developing a responsible public message about kidney disease and living donation, implementing public policy initiatives to reduce barriers to organ donation, and including patient and donor voices in all of these efforts.

Building on the White House Organ Summit and call to action

The roundtable also provided an opportunity to continue to address the call to action issued by the Obama administration in the spring of 2016 (i.e., to improve outcomes for individuals waiting for organ transplants and enhance support for living donors). The announced actions are “aimed to increase the number of people who register to become organ donors, increase the number of transplants and improve outcomes for patients, and change what might be possible for future patients by facilitating breakthrough research and development.” In addition to generating new ideas, the roundtable attendees were invited to join the existing initiatives developed through the White House Organ Summit.

For the more than 100,000 patients who are currently on the waiting list to receive a kidney transplant in the US, depending on the generosity of strangers is not a choice; it is a necessity. As a leader in the field of transplant and living donation education and research, Amy D. Waterman, an Associate Professor in Residence at the David Geffen School of Medicine at the University of California, Los Angeles, understands this better than most. “Every day I witness the gratitude that kidney patients feel when they realize that someone will donate an organ to them so that they can have a longer and better-quality life,” Waterman commented. “And, although there are not enough kidneys for everyone in need, there is certainly enough education to go around, to make people aware of their options. We must disseminate this education as widely as possible.”

Partners from eight universities and hospitals (Beth Israel Deaconess Medical Center, Duke University School of Medicine, Emory University, Johns Hopkins University, Mount Sinai Hospital, Northwestern University, Temple University, and the University of California, Los Angeles) have responded to the White House call to action and the education challenge by forming a Blue Ribbon Education Advisory Panel with the aim to disseminate organ donation education more broadly across the US through a national online clearinghouse of public educational resources.

Significant progess has been made in this effort. The United Network for Organ Sharing (UNOS) Kidney Transplant Learning Center, to launch at the end of 2017, is a product of their work. Through this effort, leaders from these institutions have agreed to share their own clinical expertise and educational content with the public, ensuring that patients, donors, and their social networks will have the educational tools they need to make informed decisions about transplantation and organ donation.

The UNOS Kidney Transplant Learning Center content will be hosted within in partnership with the UNOS—a trusted nonprofit organization that manages the nation’s organ transplant system under contract with the federal government. The expertise of the UNOS in bringing hundreds of transplant and organ procurement professionals together with thousands of volunteers has made them an ideal partner for this project. This learning center, designed in partnership with the UNOS, Health Literacy Media, and 501creative (a graphic design group), will address the shortage of reliable organ donation and transplant education currently available outside of transplant centers, providing more consistent and readily usable resources about kidney transplantation and living donation to the 670,000 Americans living with end stage kidney disease as well as their families, social networks, and the general public.

The Kidney Transplant Learning Center’s development has been in progress since 2016, when a team of Health Literacy Media experts first began to curate educational content for the site from each of the panel members’ institutions. Their process included thoroughly reviewing and sorting the multimedia topical content of each available education program to create a master collaborative document, which was then subjected to a rigorous health literacy review to develop a user-friendly, understandable, and actionable resource and learning experience.

In an ever-changing field, creating a unified and reliable hub for transplant and living donation information and education for patients, living donors, and the interested public is essential. In addition to this audience, it is anticipated that educational partners, transplant societies, and clinicians will use this information, each disseminating it to their constituents. Transplant programs, nephrology practices, and dialysis centers will be invited to endorse and use the educational site.

“I am especially excited to see that so many leading kidney organizations and education leaders are teaming up and working cohesively toward one common goal: to educate as many kidney recipients and living donors as we can,” Waterman commented.

“As a team, we’re really passionate about ensuring equal access to transplant education for all patients and working as a community to solve the kidney-donor shortage,” added Dianne LaPointe Rudow, Panel Cochair.

Development of the Kidney Transplant Learning Center is supported by Sanofi Genzyme and has engaged several strategic nationally active partners, including the UNOS, the American Society of Transplantation, the American Society of Transplant Surgeons, DaVita, Donate Life America, the National Association of Transplant Coordinators, the National Kidney Foundation, ORGANIZE, and The Rogosin Institute. With cross-collaboration and patient and donor voices at the forefront, this initiative will lead to the development of a critically important and relevant resource for those with kidney disease and the whole kidney community.

Amy Waterman, PhD, is affiliated with the University of California, Los Angeles, Dianne LaPointe Rudow, DNP, with the Mount Sinai Medical Center, and Catina O’Leary, PhD, LMSW, with Health Literacy Media. Rachel Patzer, PhD, MPH, is affiliated with Emory University School of Medicine, Mike Pressendo, with the United Network for Organ Sharing (UNOS), and David Serur, MD, with The Rogosin Institute.