How Can We Make The Finest Healthcare Available To Everyone Needing A Transplant?
Amy Waterman, PhD
Deputy Director, UCLA Transplant Research and Education Center (TREC) / Terasaki Research Institute
Professor, Division of Nephrology, University of California, Los Angeles (UCLA)
Senior Quality Officer, UCLA Kidney Transplant Program
Increasing Access to Organ Transplants
In June 2016, when Dr. Amy Waterman addressed the audience at the White House Organ Donation Summit, her message was one of hope: Transplant is the best of humanity, and it’s the best of healthcare.
But transplant is not equally available to everyone—not yet. People are dying from a lack of information as much as from kidney failure. Dr. Waterman’s work is based on the belief that, if we work together, we can solve this. We can bridge the gaps and make sure everyone has access to the best of medicine.
An internationally recognized leader in transplant research, Dr. Waterman oversees a multi-faceted program designed to effect real change. She studies how to improve transplant outcomes, expand the living donor pool, reduce racial disparities in access to transplants, ensure informed decision-making about transplant and paired donation, and understand the economic and public policy implications of transplants.
Currently, African-Americans, Hispanics, Asians as well as Caucasian patients with only a high school education are less likely than middle-class Caucasians to seek—and receive—a transplant from a living donor.
Patients who receive a kidney transplant from a living donor live significantly longer than those who remain on dialysis and recipients of kidney transplants from deceased donors.
Dr. Waterman is committed to reaching patients and potential donors who are left out of the loop, the ones for whom a missed opportunity to learn may become a missed opportunity to live or to give. Patients who lack the information to make an informed decision regarding their care represent missed opportunities for the medical system to serve.
Bridging the Education Gap in Organ Transplants
Dr. Waterman began her transplant outreach over 20 years ago, as a graduate student at Washington University, when she surveyed kidney donors to find out if they regretted their decisions. The donors reported the opposite of regret, saying that donating was one of the most profound and rewarding things they had ever done.
One universal comment, however, concerned Dr. Waterman: Nearly all donors wished they had known more before they underwent surgery. This was the beginning of what has become a multi-tiered effort to improve education and outcomes for patients, donors and families.
As evidence accrues showing significant benefits of receiving a kidney transplant from a living donor (LDKT), Dr. Waterman has sought to understand why minority patients, in particular, are less likely to pursue this treatment, why they are less likely to donate. In the course of this work, Dr. Waterman has found that all patients, regardless of race or ethnicity, face barriers to getting a kidney transplant from a living donor, and one of the most significant barriers is a lack of education and reliable information.
Three core beliefs drive Dr. Waterman’s work: 1. Transplant-eligible kidney patients deserve to make informed choices about their treatment options, especially deceased and living donor transplantation. 2. There are many generous people who might become deceased or living kidney donors, but they need to learn what donation involves. 3. If we all work together—kidney transplant patients, their families and communities and kidney healthcare professionals—our collaborative efforts can reduce the national kidney donor shortage and increase the number of people living longer with the benefit of kidney transplants.
- Read more about disparities in transplant education in What Else Can We Do to Ensure Transplant Equity for High-Risk Patients? published in the Clinical Journal of the American Society of Nephrology.
Seeking Answers and Practical Solutions
At TREC Dr. Waterman focuses on translating the findings from effective clinical trials into everyday practice through collaboration with healthcare providers, national transplant leaders and healthcare policymakers.
Dr. Waterman addresses questions such as:
- How can we use technology to deliver information to patients and potential donors?
- Can telemedicine work for kidney patients and donors?
- How do we reach patients and families who are left out of the education loop?
- Is social media an effective tool?
Drawing on clinical and translational research, Dr. Waterman designs and distributes evidence-based educational materials that:
- Empower patients in making transplant decisions by getting materials not only to potential recipients but also to important patient influencers, such as family members and friends.
- Educate and recruit potential living donors.
- Make information accessible at all phases of the decision process, from early diagnosis to dialysis.
- Reach patients who do not typically seek, or have access to, the information they need to make informed decisions.
The Future of Living Kidney Donation
In addition to educating decision-makers, Dr. Waterman supports her partners on the clinical side—the medical professionals who perform transplants every day. She works with the UCLA system, a national leader in kidney transplantation, to develop an educational infrastructure that does not just inform patients, but also makes it easier for physicians to answer questions and provide quality care.
Dr. Waterman hopes to implement the infrastructure throughout the entire University of California system. Such a concerted, large-scale educational effort could significantly reduce the kidney shortage and help more people live longer.
To communicate with as many patients as possible, Dr. Waterman develops materials in a wide range of formats. She has translated TREC’s extensive research into everything from printed brochures to comprehensive online learning modules. In 2018, her interactive mobile application MyTransplantCoach.org won the ClearMark Awards Award of Distinction from the Center for Plain Language. Current research includes a study in partnership with Kaiser Permanente in which Kaiser kidney patients are provided with an education program, ET@Home, designed by Waterman and her team, with outcomes compared to patients who receive Kaiser’s standard information package.
Cultivating a National Pipeline
Mobilizing a national pipeline of hospitals, dialysis centers, researchers, nurses, and policy makers, Dr. Waterman ensures materials get to the right hands at the right times. The pipeline also helps Dr. Waterman make the materials more effective, providing answers to critical questions, including:
- What knowledge do patients lack?
- What do patients want to know about?
- What materials and techniques are working?
- What factors influence decisions?
Testing and Improving Materials
Dr. Waterman refines materials using feedback from the national pipeline combined with research on factors affecting transplant decisions, such as the media. Her evaluations follow a three-pronged approach in line with best practices in behavior change:
- Evaluate knowledge before education.
- Implement education
- Measure knowledge after education.
- Read about a recent evaluation in A Clustered Randomized Trial of an Educational Intervention During Transplant Evaluation to Increase Knowledge of Living Donor Kidney Transplant, published in Sage.
We may not yet have enough kidneys to go around, organs to go around, but we can make sure that there’s enough education to go around.Amy Waterman, PhD