The Living Kidney Donation Project

The mission of Amy Waterman, PhD, Professor of Nephrology at the University of California, Los Angeles, and Director of the Transplant Research and Education Center, is to eliminate the kidney donor shortage in our lifetime.  She does this by educating, empowering, and engaging individuals to become living kidney donors, which enables more lifesaving transplants.  As an innovator, she designs and tests the effectiveness of health literate educational campaigns and mobile applications, amplifies the voices of living kidney donors through digital storytelling, and designs and broadcasts culturally tailored messages in national media campaigns and television. She is committed to a transformation of the national conversation about helping others.  She has published over 100 research articles, designed 13 award-winning educational resources, and founded Explore Transplant, a nonprofit organization. In 2016, at the White House Organ Donation Summit, she gave a keynote address on ensuring equitable access to transplant for the underserved. 

Living kidney donation is the best of humanity.  Charitable people donate one kidney to another, allowing kidney patients to live 5-15 years longer.  While 6500 people become living kidney donors each year, nearly 100,000 patients, many of whom will die, wait for transplants. 

I am committed to elevating more people to become living donors.  We can solve the kidney donor shortage through the generosity of humanity.

The Living Kidney Donation Project will amplify the opportunity of living kidney donation through digital storytelling, culturally tailored messages, and national media campaigns.  Through a partnership with DonateLife Hollywood, we will embed kidney donation messages within television shows. 

These efforts will ignite greater public interest in living donation.  Curious individuals will be referred to OneTransplantHub, a web-based application centralizing living donation education, stories, and transplant center referrals.  This campaign will remind all people what is possible when someone is in service to humanity. 

Over 700,000 people in the U.S. do not have working kidneys, requiring them to need regular dialysis or get a kidney transplant. Most undergo regular dialysis treatments, where a machine removes toxins from their blood. After five years, only 40% of those on dialysis are still alive.  In contrast, 80% of patients who can receive kidney transplants are alive, living life untethered to a machine, free to do what is important to them.

The shortage of living kidney donors stems largely from a lack of public awareness about the opportunity to donate and what it requires. Few people have met a living kidney donor personally. Family members and friends of dialysis patients are unaware that they could donate a kidney to them.  Many people are scared about the potential risks of donating.  Television often presents inaccurate information about kidney donation, and there are very few public awareness campaigns about the need for donors. Most are unaware of the tremendous benefits to kidney patients and actual low risks to themselves. With 318 million people in the US, if only 95,000 people donated a kidney while living, we could eliminate the kidney donor shortage in our lifetime.  

For the last two years, I have utilized an innovative digital storytelling technology platform to film the personal stories of 150 kidney patients and living donors for inclusion in an online library (www.explorelivingdonation.org).  Storytellers answer a set of open-ended questions at home on their cell phones to enable low cost video capture. The uploaded stories are edited for medical accuracy.  The Living Kidney Donation Project will expand the library to include 500 stories in both English and Spanish.  These shared stories will be rigorously tested to create culturally tailored, medically accurate messages and emotional, powerful videos for dissemination through national print, broadcast, and social media campaigns, partnerships with organizations serving kidney patients and donors, and television storylines. The “call to action” of the campaign will be to learn more using the web-based application, OneTransplantHub, a centralized repository of medically accurate, credible resources to educate, empower, and engage people in taking steps toward donating a kidney. Our goal is to normalize living kidney donation as one of many charitable acts people do, much like the Red Cross normalized blood donation in the 1980s, and empower more people in beginning donor evaluation at transplant centers nationwide.

Thirty-seven million people have kidney disease, and 700,000 have failing kidneys.  Black and Latinx patients face higher rates of kidney failure than White patients yet are far less likely to receive living donor kidney transplants. All these patients have loving family members and friends who are also affected by the severity of this illness.

As a national advocate and educator, I have conducted dozens of studies asking patients and donors about their donation-related questions and fears and built multiple, health literate educational resources to address their needs.  All components of The Living Kidney Donation Project, from the open-ended questions used in the storytelling platform, to the extensive cultural testing of videos and messages, to the design sprint creating the look and feel of OneTransplantHub have occurred in partnership with a patient and donor advisory board.  To amplify the voices of diverse patients, real-life stories of patients and donors of different racial/ethnic and socioeconomic groups, in both English and Spanish, serve as the educational foundation of this campaign. Increasing the opportunity to hear honest stories and wise recommendations from real-life people from diverse communities is critical to engaging more people in learning more about living kidney donation through OneTransplantHub. 

Of the over 300 million people in the US, we only need 95,000 new living kidney donors to step forward to eliminate the kidney donor shortage.  Receiving the Elevate Prize would enable the launch of a national communication campaign disseminating funny, heartfelt, factual, and honest stories about living kidney donation to millions of people to ignite interest, learning, and charitable action. We want living kidney donation stories of generosity and gratitude to go viral and find those unique individuals to whom this personally resonates.  

In 2017, a kidney patient paid for me to attend the TED national conference to meet with thought leaders in healthcare, entertainment, technology development, and media to determine what else could be done to solve the kidney donor shortage.  Our group brainstorming revealed that the national public conversation about living kidney donation was still very limited and storytelling techniques commonly used in entertainment to engage the public could be repurposed for this cause. 

Prior to TED, I had studied how to increase living kidney donation for over 20 years.  Numerous interventions attempting to increase living donation rates found that patients have difficulty asking others to donate a kidney because they feel too vulnerable.  Comprehensive interventions educating patients, family members, and potential donors have been shown to be the most effective.  Public interventions reaching charitable people who might not know a kidney patient are also necessary.  Finally, Black and Latinx patients have poorer knowledge about the benefits of living kidney donation and have fewer members of their communities offer to donate. Since attending TED, I have built an online library of digital stories about living kidney donation and published on the use of storytelling to transform health.  

During my graduate training in social psychology, I worked on a study investigating whether living kidney donors regretted donating afterwards. I interviewed hundreds of living kidney donors and asked questions like, “Would you do it again? Did you suffer financially or emotionally? Are you still close with the recipient?” I asked them questions about many worst-case scenarios. 

Donors reported to me that instead of being harmed, they actually benefited.  Donors would tell me how moved they were watching their parent, sister or child return to health. They talked about how donating gave their life meaning and beauty.  Recipients of their kidneys were incredibly grateful. 

Listening to them, I learned what is truly important in life.  These stories make you grateful. They bring hope.  I am passionate about this field because it is so beautiful.  Health can truly be restored due to the generosity of another. 

Right now, as our country becomes increasingly divided, living kidney donation is also a reminder of the value of breaking down silos versus putting them up.  No matter what your race/ethnicity, kidneys are all the same color – kind of pinkish. We need to amplify the message that inside we are all the same.

I am a national transplant innovator and a trusted, compassionate patient advocate.  I am a Professor in Nephrology at UCLA, one of the largest transplant centers in the nation; I also have a second appointment as the Deputy Director of the Terasaki Institute of Biomedical Innovation where I am responsible for innovating to improve transplantation.  My Transplant Research and Education Center is staffed by social workers, education designers, communication experts, and researchers, all of whom are available for this Project. 

As the top transplant education expert in the U.S., I consult on patient education nationally and internationally. I have developed 13 transplant education resources that are used internationally, all of which have been tested through randomized control trials and proved effective for improving patient knowledge and informed decision making across diverse communities.  In 2016, I launched the National Kidney Transplant Learning Center at President Obama’s White House Organ Donation Summit. I started a nonprofit organization, Explore Transplant, to help reduce inequities in access to transplant.  Most recently, I was named the 2019 Clinician of Distinction by the American Society of Transplantation.  Helping to support patients and increasing living donor transplant rates is what I was born to do.

In 2014, UCLA Nephrology offered me a professorship with a $1 million gift provided by an outside organization. I gave up tenure and moved away from my family, but after I got to Los Angeles, the promised gift fell through.

At that moment, I decided I had to fight.  I made appointments with as many leaders in LA as I could, looking for opportunities for synergy.  I wrote new grants.  I started working with an innovation think tank, thinking outside the box. 

Personally, I learned how to be vulnerable and still keep going.  I would say to my staff, “Well, now, I have even more compassion for my patients.” 

At one point my former employer called me and invited me to return. UCLA told me, “We’ve been watching you handle difficult circumstances with grace, and we want to stand up for you.” And they found a way to get me all the funding that I had needed to begin with, plus more. And, I realized that I got this funding at the right time, when I had become a true leader.  And during those years when I had very little support, I had cultivated something even more important: resilience.

In 2016, President Barack Obama’s administration reached out to invite me to speak at the White House Organ Summit. The summit discussed different ways to end the organ donor shortage including using 3D-printed kidneys. When I got the call, they asked me to speak about the launch of the Kidney Transplant Learning Center, an online education resource developed in partnership with the United Network of Organ Sharing.  I was thrilled and terrified.

In less than 24 hours, I wrote and recorded a five-minute speech and sent it to the White House for approval. I heard back that I was “in” and had been selected as one of just a few experts to address the audience at the blue curtain where the President spoke.  My speech came after a Surgeon General and before a Nobel Prize winner. I got to say that every American deserved equal access to the best treatments for them.  I cried that day on the podium.  Sharing my commitment to educating and empowering patients at the White House was very moving.  Luckily, patients and donors emailed me from across the country to say they were crying, too, and to thank me for saying what I said.  

This project disrupts the status quo by transforming the public conversation from living donation being a rare and risky thing to a highly normative charitable behavior. Since 2004, the number of living donors donating one kidney each year has hovered between 6000-7000, while the waiting list continues to grow. For decades we have predominately discussed living donation with patients in medical settings, an approach that has not been able to move the needle. A large-scale public awareness effort, combined with increased accessibility to centralized resources about living kidney donation through OneTransplantHub can reach a broader group of potential living donors, family members, and patients. 

Also, there are no social platforms consolidating information for potential living kidney donors and those in need of kidney transplant to learn and connect with one another. OneTransplantHub will improve that.

Finally, our project is entirely patient-driven, with the wisdom and knowledge of real living kidney donors and recipients guiding our understanding of which messages work and what is important to someone considering kidney donation. Our project will take a biopsychosocial approach incorporating theories at the psychological (emotional), social, and biological levels.

Giving and receiving a kidney transplant is a highly emotional and vulnerable experience. Because of this, theories that include how emotions impact behavior are crucial to apply to behavioral change. Stories that arouse an emotion from the viewer are more likely to both decrease counter arguing of the viewer against living kidney donation and encourage the viewer to continue to think about the information after the video is over versus didactic education alone. My previous research has applied Prochaska’s Transtheoretical Model (TTM) of Behavior Change to understand patients’ decision-making around health. TTM holds that patients vary widely in their levels of knowledge, readiness, and self-efficacy to make important decisions about their health, like whether to pursue an LDKT. For patients in early stages of readiness, the TTM recommends listening to stories of real-life donors and recipients and encouraging small actions related to learning more (e.g., sharing information with others) to help increase people’s knowledge without pressuring them.

In addition, hundreds of published health intervention studies demonstrate that manipulating constructs in the theory of planned behavior (TPB) (Montaño & Kasprzk, 2015) are successful for desired behavior changes like getting recommended routine health screenings, quitting smoking, and engaging in safe sex. TPB asserts that the best predictors of changed behavioral intentions are attitudes, subjective norms, and perceived control. As such, changing any one of these predictors to be more favorable toward living kidney donation is likely to increase intention to donate. The way someone feels about a behavioral intention is a strong predictor that they will actually engage in that behavior in the future. The stories in this campaign will encourage people to feel proud, hopeful, and helpful when they intend to donate a kidney, which would predict more favorable attitudes toward donation and a higher likelihood of doing so. These two theories in combination, TTM to meet people in their stages of readiness and TPB to help carefully test and design messages that will produce more favorable attitudes and emotions toward donation, will allow us to move the needle in ending the kidney donor shortage.

In the first year of this project, we will gather 500 new stories in both English and Spanish from living donors and kidney recipients for the storytelling library.  In year two, we will conduct the first phase of the mass communications public awareness campaign, launching in major markets across the state of California, including but not limited to Los Angeles County, Orange County, Riverside County, San Diego County, San Francisco County, Alameda County, Fresno County, Sacramento County, Ventura County, San Bernardino County, and others. We expect to reach 1,909 people per million state residents per figures from the California Center for Disease Control.

Upon completion of the California campaign, and upon review of metrics and feedback, we will launch a nationwide campaign that will reach 37 million Americans over five years.

During the first phase of the campaign in California, we will work with DonateLife Hollywood, an organization that works with screenwriters on television shows and films in the Hollywood entertainment industry, to help develop storylines that promote living kidney donation for broadcast television shows that have a large audience, such as Grey’s Anatomy, which has a 7.1 million viewership as of March 2020. We also want to find partners with Spanish language and non-English language television to create storylines for popular television shows that can promote living kidney donation in culturally relevant and responsive ways. 

In the first year, we plan to expand the living donation storytelling library to include 500 English and Spanish-language stories, conduct messaging research with diverse audiences to understand what types of video content and messages are most motivating, and complete OneTransplantHub to enable interested potential living kidney donors to begin evaluation at transplant centers. 

In the next five years, we will activate and measure the effectiveness of a California-regional based media campaign and disseminate the content within kidney recipient and donor communities using social media.  We will also work with television screenwriters to build motivating living kidney donation stories.  Once the regional campaign is complete, we will work in partnership with national transplant organizations like the United Network of Organ Sharing (UNOS) to expand the best practices and mass media campaigns nationally, as I did at the White House.  New content and resources through OneTransplantHub will continue to be added. 

First, the pandemic and its health and financial consequences on families may limit people from being interest in donating a kidney during this time. Second, this project requires a large-scale, mixed methods approach with multiple components be developed in a short timeframe. This team must be fully supported to be able to craft storytelling and educational content, communication messages, and effective media campaigns. 

Regarding the pandemic, the majority of this project is conducted digitally and through broadcast and online platforms. Storytellers are able to record their video stories from the comfort of their own home, people interested in learning more about living kidney donation are directed to the web-based app, OneTransplantHub, and interested potential living donors and kidney recipients can learn remotely without having to risk transmission or infection.

When someone has decided they are ready to pursue transplant or living kidney donation, OneTransplantHub has resources and checklists to prepare them for their in-person visit to a transplant center for evaluation. We have created resources to prepare individuals to go to the transplant center for transplant and donation evaluation in the safest possible way and following different strategies they can use to reduce risk of transmission or infection of COVID-19.

Although this project requires a large-scale, mixed methods approach with multiple components the must be developed in a short timeframe, my team is nimble and pivots quickly. When the pandemic hit, I activated my team, and we quickly created new resources to help patients navigate the COVID-19 world and reduce their risk (kidney and transplant patients are immunocompromised). To overcome barriers regarding the size of this project, we are pursuing partnerships to enhance our marketing and PR capacities and looking for an advisor to serve as our Chief Technology Officer to advise us in the completion of OneTransplantHub. 

I am director of the Transplant Research and Education Center (TREC), an interdisciplinary team of scientists, researchers, patient education specialists, health literacy experts, and health communications professionals. Our current major partners and funders are the University of California, Los Angeles (UCLA), the largest volume transplant center in the United States, and the Terasaki Institute for Biomedical Innovation (TIBI), an innovation thinktank with a focus on solving problems in organ transplantation. Our collaborative team of specialists includes partners from Health Literacy Media (health literacy and communications), 501creative (web programming and graphic design), Red Ninja Labs (mobile application developers with expertise in crisis communications), StoryTap (web application developer with a specialization in social media and digital communications, Moore:Good and Shoestring PR (local PR firms), and Robin Nabi, PhD, from the University of California, Santa Barbara (UCSB), a leading expert on changing behaviors through the use of emotional messages.

TREC also partners with patient advocacy and education organizations and professional associations to disseminate patient and living donor communications. These partners include: the American Society of Transplantation (AST), the United Network of Organ Sharing (UNOS), Transplant Recipient’s International Organization (TRIO), OneLegacy Foundation, DonateLife, Canadian Blood Services, the National Kidney Registry, and others.

Additionally, I currently serve as an expert on living kidney donation for DonateLife Hollywood to help create new storylines for broadcast television. DonateLife Hollywood provides film companies, television programs, entertainment studios, producers and writers have access to a network of experts for free consultations on all aspects of organ donation and transplantation. 

The Transplant Research and Education Center (TREC) is a partnership between two nonprofit organizations – the University of California, Los Angeles, which is an institute of higher learning, and the Terasaki Institute for Biomedical Innovation (TIBI).

TREC is the producer of the Explore Transplant suite of programs, which are health literate, modular health education programs about kidney transplant geared towards CKD/ESKD patients, potential living kidney donors, families, and caregivers. TREC conducts trainings for medical providers on how to use Explore Transplant programs to educate their patients about transplant. TREC also created the Living Donation Storytelling Library, a collection of video stories made by real transplant recipients, living donors, family and friends, kidney patients and providers and stored in an online library at ExploreLivingDonation.org. We also have created the Kidney Transplant/COVID-19 Listening and Resource Center (KTLRC), an innovative call center where kidney and transplant patients, their families and caregivers, and living kidney donors to share common questions, fears, and challenges, capture information needed to improve healthcare delivery, and that allows TREC to disseminate educational resources directly to help them make better decisions, maneuver more effectively in a new telehealth care system, and stay alive.

We created each of these educational resources in response to requests and queries from patients, living donors, and their families.

We sustain our programs through fundraising from granting agencies and corporate sponsors, institutional partnerships, and earned revenue from provider trainings and selling Explore Transplant resources and materials to dialysis and transplant centers, providers, and hospital systems. 

We use a service subsidization revenue model. TREC brings in earned revenue through fees for provider trainings of Explore Transplant and by selling Explore Transplant resources to transplant centers, dialysis clinics, and hospital systems nationwide.

For the Living Kidney Donation Project, the call to action of the public awareness campaign will direct interested persons to OneTransplantHub, a web-based mobile application offering an array of features, including: (1) real-time COVID-19 aggregated news data alerts and push notifications tailored for kidney patients that leverage machine learning algorithms to serve up relevant content using the same personalization techniques that Netflix and Amazon use; (2) a checklist for optimal patient emergency preparedness including information, processes, and signposting (i.e., locating insurance card, accessing telemedicine); (3) resources to seek potential living donors using social media networks; (4) evidence-based, health-literate FAQs about kidney disease and its treatment options that can be texted to patients; (5) a moderated peer-to-peer support network to share and ask questions of peers and experts; and (6) a personalized risk-benefit calculator assessing different treatment options.

We will partially subsidize the ongoing public awareness campaign by monetizing OneTransplantHub through partnerships with private insurers, Medicare, individual providers who may pay per referral, and other mechanisms. Patients, however, will never be charged to use OneTransplantHub.

We will also continue to seek grant funding through appropriate channels, such as Small Business Innovation Funds/Small Business Technology Transfer, NIH research grants, foundation grants, and other donations. 

For the initial development of the Living Donation Storytelling Library (explorelivingdonation.org) UCLA and TIBI provided $70,000 in grant funds. We have also received grants from Canadian Blood Services ($16,500) to develop living kidney donation stories for Canadian audiences and from the pharmaceutical company, Sanofi, $50,000, to support the online library. UCLA and TIBI have also provided $30,000 in seed funding for the design sprint phase of OneTransplantHub, the web-based application under development to manage inquires from the call to action to “learn more” as part of the Living Kidney Donation Project. 

In addition to the Elevate Prize, we will seek funds for different aspects of this project. We will seek funds to support research related to effective health behavior change messaging and organ donation from the National Institutes of Health (NIH), the Health Resources and Services Administration (HRSA), and various foundations. We will also seek “innovation” funds through the University of California research grant system to help support the mass media public awareness campaign.

Additionally, we currently have an application under review with the Patient Centered Outcomes Research Institute (PCORI) to fund a study using OneTransplantHub to education patients and help them pursue living kidney donation transplant. This request is less than $2 million over two years. The PCORI request does not include any aspects of the mass communications campaign but is focused on the development and testing of OneTransplantHub to increase living kidney donation. We also have applied to participate in a pitch competition with the Robert Wood Johnson Foundation to further develop OneTransplantHub that has a monetary first prize of $25,000. 

Total estimated expenses for 2020 are approximately $500,000. These expenses cover the development of the living donation storytelling library with additional stories in English and Spanish, development and testing of emotional messaging and videos from the library for the public awareness campaign, and completion of the OneTransplantHub web-based application.

Specific expense items include (but are not limited to):

• Key personnel to reach out and recruit 500 diverse storytellers to record their personal kidney donation stories for the online library
• Monetary incentives for storytellers
• Research Assistants and Video editors to code and tag new stories added to the library
• Web designers to add stories to the online library and develop current website structure to support different languages
• Key personnel and collaborators to develop medically accurate and health literate test messages, based on the storytelling library content, for diverse audiences and in multiple languages
• Key personnel and collaborators to conduct social science experiments with patients, living donors, and members of the general public to receive feedback on participant engagement to test their effects on attitudes, knowledge, and behavioral intentions
• Mobile app developers and key personnel to complete the development of OneTransplantHub
• Key personnel, collaborators, and consulting partners to develop a mass media communications campaign

Upon completion of these activities in 2021, we will launch a statewide public awareness campaign using print, digital, and social media as well as broadcast television and radio to ignite public conversation about the generosity of living donors and inspire people to donate kidneys to help others.

First, the Elevate Prize’s fundamental mission to elevate humanity and inspire others to act as engines for social good is heavily aligned with the field of organ donation.  Our society, as a whole, could benefit from hearing stories of normal people doing tremendously good deeds right now.  The Living Kidney Donation Project has these stories, and I am excited to launch them publicly. I also am extremely prepared and well positioned to advocate for this mission on a national stage.  Increasing living kidney donation rates is a non-partisan healthcare cause advocated for by both Presidents Obama and Trump. 

Second, the field of organ donation is in dire need of a paradigm shift. Other grant opportunities would only allow us to attack this problem in small, disjointed ways that already have been shown to be inadequate and slow.  Combining a campaign with a centralized resource hub will mobilize the public to help with ending the kidney donor shortage most powerfully.  We have both of these resources ready to launch.

Finally, each day that passes more people die on dialysis waiting for a kidney donor.  Winning the Elevate Prize would disrupt a field, increase its visibility a hundredfold, help more Americans be alive, and hopefully, inspire a weary nation.

To launch this campaign statewide across California and eventually nationwide, I will need partners who have expertise beyond my current personnel and key partners.

When the Living Donation Storytelling Library launched in 2019, I worked with a local PR firm and did media interviews with LA-based outlets. For this project, I am seeking partners who can mentor and/or coach me on publicity for a nationwide campaign. I am seeking advisors and/or partners with expertise in radio/media buys and placing ads in different markets. We would like to partner with a firm or firms in PR, advertising, and social media with experience in running national campaigns that focus on health promotions and who has experience buying in major markets and disseminating successfully to create brand-name recognition.

Additionally, we are seeking a board member or advisor to serve as a Chief Technology Officer to advise on the completion of OneTransplantHub. 

Previously, I brought together all the leading transplant and organ donation organizations to create and launch the United Network of Organ Sharing (UNOS) Learning Center, which I unveiled at the White House in 2016. I will bring organizations together again with new national partners to launch the Living Kidney Donation Project.

We would be interested in partnerships with social media platforms to develop unique partnerships and  campaigns beyond ad buys within each platform to promote living kidney donation. We are interested in partnerships of other tech communications companies such as Apple, who have a wide range of consumers for whom we could embed living kidney donation messages in standard emails from Apple as a “sponsor.”

We would be interested in partnerships with Organ Procurement Organizations (OPO),  the Department of Motor Vehicles, and United States Postal Service to embed reminder messages or messages of interest in regular reminders that are sent to residents when they change addresses and are reminded, for example, to register to vote in their new district. We would also be interested in a partnership with the Red Cross and other blood donation organizations to spread the message to normalize living kidney donation.

Additionally, we would be interested in partnerships with English and Spanish language news organizations to help us disseminate stories. We would like to include stories of celebrity personalities who could use their platforms to spread the message of living kidney donation to elevate humanity.