By Anne Osuji, Research Associate
As we enter a new decade, let’s take a moment to reflect on our 2019 year in review. The TREC team had some incredible moments this year, and we are proud to have accomplished so much in 2019! Together with our partners, we launched several new studies, won new grants to further our work, published over a dozen journal articles and abstracts, presented at national conferences including the 2019 American Transplant Congress in Boston, designed new education for patients and donors, and continued training young scientists and researchers in the field. As we welcome the new decade, let’s reminisce over some of this year’s highlights!
Back in January, we set some big goals for our staff, for our lab, and for our mission to help more people learn about transplant and locate living donors! We brainstormed ways to reach new audiences of learners by connecting with many of you on social media. We explored new technologies and platforms that could help us to spread the word about our Explore Transplant educational resources. Additionally, we planned talks that help inspire professionals nationally and internationally to continue working towards health equity!
My Transplant Coach interactive web application
In February, My Transplant Coach, an animated decision aid that uses videos and personalized content, was added to our website. The tool allows patients to learn about their kidney disease treatment options in an interactive format with graphs and data that help them to make informed decisions.
In March, our partners at the Terasaki Research Institute launched the One Transplant Forever Campaign, a research initiative focusing on ending transplant failure and making a patient’s first transplant last forever. Together, we participated in the Donate Life Walk hosted by OneLegacy and showcased our education and mission with a booth.
The Living Donation Storytelling Project at explorelivingdonation.org
In April, we launched the Living Donation Storytelling Project, an innovative digital library of stories shared by real patients, donors, and their friends and family. The library has been growing ever since! The library houses more than 150 stories and is an ever-growing collection of candid and heartfelt video stories shared by people of diverse racial and ethnic backgrounds, life experiences, and geographic region. It is an inclusive space where people can go to learn about what it is like to donate or receive a kidney, or to share their need for a living donor.
Our award-winning Explore Transplant materials were showcased at the May 2019 UNOS Transplant Management Forum by our partners at Health Literary Media. This was just the start – our health-literate kidney transplant and living donation education materials were shown to different groups across the country this year, including at trainings in Hawaii and Duke University Hospital to name a few!
We presented our research at the June 2019 American Transplant Congress in Boston alongside the Terasaki Research Institute. At the conference our lab was elated to learn that our founder and director, Dr. Amy Waterman, was named the 2019 Clinician of Distinction by the American Society of Transplantation. Our staff was honored to share our research at the UCLA David Geffen School of Medicine Research Symposium, at UCLA’s Department of Medicine Research Day, and at the first ever UCLA Solid Organ Transplant Symposium. We also continued our exciting work creating modular education for patients and donors in collaboration with the Connie Frank Kidney Transplant Center at UCLA, and presented about our progress at the LEAN Poster Session hosted by UCLA Health.
Dr. Waterman describes a modular education quality improvement project
In August, Dr. Waterman and Jen Beaumont of TREC and TRI attended the Living Donation Collective meeting, led by the Scientific Registry of Transplant Recipients (SRTR). The SRTR aims to follow all living donors long-term to monitor and ensure their safety. The Connie Frank Kidney Transplant Center at UCLA is one of 10 centers participating in the pilot, with plans for national expansion!
In September, Dr. Waterman was the closing keynote speaker for UHN Transplant Program’s 1st Annual Symposium on Access & Equity in Living Organ Donation & Transplantation! She presented a talk titled, “Getting to Equity: The Power of Storytelling to Inspire Change.” This was followed by a talk in Ontario on “Education to Increase Pursuit of Transplant: State of the Field and New Innovations.” Through these events, Dr. Waterman met and brainstormed with over 300 professionals who are committed to supporting patients with kidney and liver disease.
Participants of the 2019 Research Fast Pitch
In an exciting and unexpected opportunity, Dr. Waterman and the TREC team competed in the annual Research Fast Pitch, a shark-tank style competition for the best health research initiative hosted by the Community Clinic Association of Los Angeles County. Dr. Waterman pitched to an expert panel of judges about the need to bring transplant education and improved referral systems to the Los Angeles safety-net community and was recognized as the runner up. In 2020, we will continue working with safety net leadership to bring high-quality education to patients in need.
As December ended, we celebrated getting final abstract and paper submissions in and reflected on our guiding values, to: innovate, collaborate and be of service to patients, first and foremost.
We are very grateful to our dedicated partner, the Terasaki Research Institute, and to UCLA Health, Health Literacy Media, StoryTap, Kaiser Permanente Southern California, the National Kidney Registry, and the many individuals, organizations, and funders who collaborated and supported our work this year.
Here’s to a new decade, new collaborations and innovations, and new ways to improve healthcare for all!