Giving Patients A Voice

The CDC defines health disparities as “preventable differences in the burden of disease, injury, violence, or opportunities to achieve optimal health that are experienced by socially disadvantaged populations.” Systemic racism — structures, policies and norms that assign value and determine opportunities based on skin color — plays a significant role in creating and maintaining health disparities, which are directly related to unequal distribution of social, political, economic and environmental resources. This puts people of color at greater risk for poor health outcomes. Amy D. Waterman, PhD, a transplant innovator who recently joined the Houston Methodist Research Institute and Department of Surgery, is working with a diverse team of research leaders to identify, address and ultimately reduce health disparities and inequities to improve health outcomes in the most vulnerable patients.

Waterman recently received an R01 grant from the Agency for Health Research and Quality (AHRQ) to engage patients at risk for kidney failure earlier in learning more and preparing for a kidney transplant in the future. She describes the process of designing multilevel interventions to improve kidney care as activating support along a series of concentric circles. At the center of the circle is the patient, who can be empowered to learn more and attend scheduled appointments. Immediately outside of that circle is the patients’ immediate support network - their family and friends. Patients who bring family members to their transplant appointments are more likely to complete the transplant process successfully. Family and friends need to be involved in decision-making about transplant, even considering become living donors themselves. Health-care providers and health-care organizations comprise the next two rings of circles. Providers, especially those working outside of transplant centers, could recommend transplant as a treatment option to more patients and help disseminate health literate education about its advantages. Systems also could build provider dashboards to identify eligible patients who may benefit from discussions about transplant and involve translators in discussions to better educate patients who do not speak English as their primary language. The system also can incorporate educational technology solutions such as texting software, QR codes and mobile applications to support patients in learning and communicating with providers. Waterman has received a National Institutes of Health AIM-AHEAD pilot grant to develop a risk index to determine which patients are at higher risk of derailing from transplant evaluation. This will help ensure system resources can be better activated to assist them prior to them dropping out. Waterman is also committed to expanding the different communities of stakeholders involved with building more influential solutions to flip the script. As a psychologist, she advocates listening more to patients and building strategies based on what they recommend. “I spend a lot of time trying to identify challenges because, as health-care providers, we aren’t always fully aware of what patients are facing. We come in and say, let me give you an education about your disease, which is great, but we often don’t talk about the patient’s whole life and its challenges,” Waterman said. “What I find exciting about our work in the Patient Engagement Research Lab is that we don’t assume we fully know our patients from the get-go. Our research uses established methodologies that really get into the world of a patient and hear what they want and need as opposed to telling them what we think they should do. My belief is that if we can champion the patient voice and build innovative solutions that patients recommend as being most helpful, a more positive healthcare experience will occur and greater access to transplant will result for all racial/ethnic minorities.”