By Erica Ho, Research and Education Associate
On September 11, I attended Day 1 of the American Association of Kidney Patients (AAKP) National Patient Meeting. AAKP is the oldest and largest kidney patient organization in the United States and its mission is to improve the lives of kidney patients through education, advocacy, and community engagement. The National Patient Meeting is an annual event where members of the kidney community can access the latest news and research on kidney disease. This year, the presentations and exhibitions focused heavily on the importance of being mindful of the patients’ experience in the development of new technologies and solutions to improve outcomes for kidney disease patients. Some of the talks I attended discussed topics such as the importance of patient engagement in clinical trials, how patients are guiding the future of kidney research, and why plain language is important in kidney and transplant care. At TREC, we share in the value of designing patient education and outreach to be patient-centered. We demonstrate this by ensuring our health education is created using health literacy best practices and through our Living Donation Storytelling Project, where patients themselves talk about their transplant journey and answer common questions people exploring transplant might have.
The first presentation I attended of the day focused on engaging patients in clinical trials. Dr. Shahid Muhammad, an academic researcher from the University of Western England, Bristol who studies kidneys presented on the importance of designing clinical trials to be patient-centered. This means that researchers should be communicating constantly with patients and should be very mindful of what the patients in their study want. He believes that a well-designed study has informed and involved patient participants, peer support groups, and accessible results and reports to keep patients knowledgeable and able to understand the progress being made. Good communication with researchers and feedback from the patients will make the clinical trial stronger and more likely to address the needs of the patients since they are involved in the trial design process.
Another interesting talk I attended was on how patients can guide the future of kidney research. This talk was a compilation of speakers discussing why patients are crucial to the innovation and design of new transplant technologies and solutions. Dr. Prabir Roy-Chaudhury started the presentation with a talk on how patient-centered research can be effective in addressing various barriers to healthcare accessibility, such as medical mistrust, miscommunication, and disparities that affect minorities. Dr. Crystal Gadegbeku described her involvement with a program called NEPTUNE, which is a research consortium comprised of researchers, physicians, and patient advocates working to cure nephrotic syndrome (a chronic disease that causes your body to make too much protein in urine). Dr. Sagar Nigwekar then talked about how patient and caregiver input is important to coming up with solutions to what the patient prioritizes, rather than only focusing on what a doctor may deem important. Finally, Dr. Elisa Gordon wrapped up this segment by talking about how keeping patients actively involved in clinical trials will result in a better trial, which will not only benefit them ,but future patients and the entire research field as well.
Lastly, Dr. Allison Tong from the University of Sydney led a breakout session on plain language. Dr. Tong discussed how to change the vocabulary we use to describe kidney disease to patients to make sure we continuously empower and uplift patients. Researchers and providers alike should consider being mindful of the words we use to discuss kidney disease, and recognize that using phrases like “end stage kidney disease” might cause distress or confusion in new patients. Changing the vocabulary we use can make a huge difference in how patients respond to their treatment and the relationship they have with their care team. Because TREC works frequently on making sure our education materials are written in a way that help patients learn without becoming overwhelmed or discouraged, this breakout session was particularly important and applicable to the work we do at TREC.
The 2020 Patient Meeting was extremely informative and it is inspiring knowing that patient engagement and the patient experience is being acknowledged as an important area of research in the field. Hopefully, in the future, as more research is done to improve patient involvement in research and treatment, this will lead to massive improvements in outcomes for not only kidney patients, but the entire healthcare field.