It takes a village to create and deliver the kind of kidney transplant education that can really meet the needs of healthcare providers, patients, and donors across the United States. To reach 650,000 plus people suffering from end-stage-renal-disease (ESRD). For those of us who work in this field, it also feels as if change is the only constant.
While working in my first academic job as a faculty member at Washington University, St. Louis in 2009, I developed an award-winning series of patient education and provider training programs, Explore Transplant and Explore Living Donation, based on my previous research findings and the transtheoretical model of behavior change.
The programs were designed to address key gaps in patients’ transplant knowledge and empower them to be able to make decisions about their health care options. Around this time, I became aware of another local nonprofit that was focused on health literacy and education—the organization that is now called Health Literacy Media (HLM).
I quickly became aware of HLM’s skill in the area of customized communications, health literacy for diverse audiences, and the sophistication of its digital marketing abilities. They partner with health care providers, advocates and organizations who want patients to feel better, systems to flow better and materials.
As I left my faculty position at Washington University and came to work at the David Geffen School of Medicine at the University of California Los Angeles in 2013, ET’s educational activities were expanding in a major way. After conducting 120 dialysis provider educational trainings that benefitted tens of thousands of kidney patients who were served by over 3,000 dialysis centers in the United States, ET became a highly sought after resource.
Recently ET will be experimenting with more web-based, multimedia education efforts and international outreach. We have launched a Canadian version of ET in Ontario. In 2017 we have plans to develop education for Ethiopia, Alberta and Singapore.
As I refocus my own efforts on research in the coming year, I needed additional support to manage these national and international efforts and increase our bandwidth to provide needed services to the dialysis and transplant community. I reached out to colleagues at HLM who were well positioned to help me in a few specific areas: plain language review, online and digital media, translation, and most importantly, ensuring that future ET efforts accommodate the needs of patients from diverse cultures around the world.
One day, hugely excited about all of ET’s new initiatives, but also slightly desperate for help, I reached out to Catina O’Leary, the Executive Director of HLM. We were already working on a national website project together and realized the true overlap in our missions. I explained the opportunities and challenges arising for ET education.
It seemed that without hesitation, Catina and HLM were ready to help. She simply said, “let’s build this!” Continuing to create a great educational effort that could really help patients was the shared goal that brought us to the same table.
I was thrilled to find a full partner in the HLM team, who work hard to ensure that health information and services are presented in ways that lead to positive health outcomes. The excellence, creativity and passion of the HLM media team with Catina O’Leary at its helm is unrivaled. I look forward to what we can create together.
In 2017 we are excited to officially announce that ET is becoming one with HLM through a new partnership!
I will also offer a quick snapshot of the exciting things we are working on:
- United Network for Organ Sharing (UNOS) Kidney Transplant Learning Center launching at the end of 2017.
- Explore Transplant international projects underway in Canada, Ethiopia, Singapore.
- Living Donation Storytelling Project, a pilot initiative to film and share stories of living kidney donors, recipients, and their family and friends using mobile application technology and social media. Launching in 2017.
- UCLA, XYN Management, and ET, with support from Sanofi Genzyme, have been constructing a beta version of an iOS-based educational application, My Transplant Coach (MTC). The app was successfully piloted at leading transplant programs and showed an increase in patient knowledge, empowerment, and interest in transplantation.
When I joined HLM in 2012, the HLM Board and staff began to shift focus a bit, as we learned that we could extend the strategies we were applying in Missouri to benefit people across the nation and the globe. Over the past 5 years, we’ve expanded our reach with the guiding philosophy toward the application of best practice health literacy strategies in significant and meaningful contexts.
Cue the call from my friend, Dr. Amy Waterman, with the opportunity to work together on the Explore Transplant program. As a group, HLM’ers are thrilled to weave our strategies through these excellent transplant programs that are, at the core, all about making complex health information accessible and actionable for people when and where they most need support. It’s a perfect fit!
From us to you, here’s to a great year to come!
– Amy Waterman & Catina O’Leary
Questions about the partnership between Health Literacy Media and Explore Transplant, or about education needs can be addressed to Michelle Roberts, HLM Creative Director, firstname.lastname@example.org