15 Dec My Transplant Coach – A New Decisions Aid for Patients with Kidney Failure
HLM is proud to announce the launch of My Transplant Coach, a new resource to help kidney patients understand their condition, and assist them in making healthcare decisions.
Part of the family of educational programs available through our partner Explore Transplant, My Transplant Coach is an online, interactive, video-based decision aid for patients with kidney failure. It uses animated videos and personalized, data-driven charts to help patients understand what treatment options are available, so they can make informed decisions that are right for them and their families.
The resource is a part of HLM’s drive to put health literacy into action, and is designed from the ground up around evidence-based health literacy practices. It’s expected to make a major contribution to the field of kidney transplant and to be a model for future health literate multi-media decision aids in healthcare.
The videos in My Transplant Coach feature, “Tracy,” a transplant professional, who speaks to different patients and educates them on a wide variety of kidney transplant topics:
- Kidney transplant vs. dialysis
- The types of deceased donor kidneys available and the benefits and risks of each type
- The benefits and risks of living donor kidney transplant
- Why people choose to get a transplant or choose to donate a kidney
- Common myths and questions about kidney transplant
My Transplant Coach also empowers patients with personalized, data-driven charts that allow them to compare different treatment options. Patients enter information into an interactive form, and an algorithm produces clear, health-literate graphs that compare expected survival rates for similar patients who choose living or deceased donor transplant when compared to dialysis. Calculations include body size, age, sex, race, blood type, length of time on dialysis, location, and other medical factors. Patients can email these graphs to themselves to refer back to, and to share with doctors and loved ones.
The interactive graphs show how many people with similar characteristics are expected to be alive after 5 years based on the treatment selected, what happens to similar people who choose to wait for a kidney from a deceased donor in the same area for 5 years, and how long, on average, similar patients live after kidney transplant, depending on what type of kidney they receive. The survival data and algorithm were validated with more than 200 patients at leading transplant centers in Boston, MA and Los Angeles, CA, and the findings published in peer-reviewed journals and presented at the American Transplant Congress.
Catina O’Leary, PhD, President and CEO of Health Literacy Media, said, ‘Health Literacy Media is thrilled to have partnered on the development of My Transplant Coach — a patient facing, health-literate and accessible multi-media educational tool. Tools like this that provide patients and their families access to clear and accurate health information when and where they want it are critical to support people in making informed treatment choices.’
An important health literacy principle in this resource is the focus on personalized information and an acknowledgement of the emotional concerns of patients, not just their health concerns. Using the video platform, the resource provides context—not just numbers—to discuss risks and benefits for both patients and potential donors. My Transplant Coach guides users through the facts in a warm and interactive environment, giving reassurance that they are the experts in their own lives and the only people who can know what decision is right for them. It provides important information on the value of living donation and suggests approaches to overcome the fear and hesitation common in patients facing this difficult choice.
My Transplant Coach is part of a collaboration across three top health organizations––UCLA Transplant Research and Education Center (TREC), Health Literacy Media (HLM), and Xyn Management. TREC designs and conducts research and educational interventions about kidney disease, transplant, and living donation. HLM specializes in improving health literacy through clear communication trainings, plain language messaging and design, audience research, content development, and active interventions within underserved communities. My Transplant Coach is part of HLM’s drive to see health literacy in action–using health literate tools and documents to make a direct difference in lives of patients and to aid providers in explaining complex decision-making information simply. Xyn Management is a technology company dedicated to improving the care of transplant patients through the use of predictive analytics, quality assurance software, and improved patient reach.
My Transplant Coach was funded in part by Sanofi Genzyme, a biopharmaceutical company that focuses on developing specialty treatments for debilitating diseases that are often difficult to diagnose and treat, providing hope to patients and their families.