People with underlying medical conditions, such as kidney disease, are at a higher risk to have poor outcomes if they get COVID-19. According to the National Kidney Foundation, one in three Americans are currently at risk for developing kidney disease, which is the ninth leading cause of death in the United States. 

Associate Dean for Faculty and Research Teri Browne helped complete a five-year study last year with kidney disease patients and family members. But some new funding from the Patient Centered Outcomes Research Institute allowed the team to continue their study by learning how COVID-19 is affecting research engagement in this project. 

Browne was part of the PREPARE NOW study, a five-year project funded by PCORI in partnership with Duke University, Johns Hopkins University, and Geisinger Medical Center in Pennsylvania (where the study was completed). The project examined the testing and intervention of a health system to provide a model of care to improve the lives of kidney disease patients and families, who served as research partners and co-investigators. 

“PCORI was interested in looking at people's ability to actually do research during COVID. They want to know the struggles of researchers to continue doing research,” Browne says. “It's basically a project examining the actual research process behind the larger study.”  

According to Browne, PREPARE NOW worked with six kidney disease patients and two family members as co-investigators during the five-year project. 

“These patients and family member co-investigators have partnered with us on every aspect of this study,” Browne says. “This particular study involves asking them about their experiences, and how COVID has impacted their ability to work with us as research partners.”

As part of the PCORI supplement application last November, Browne and her team, which included a student from the Arnold School of Public Health, interviewed each of their patient and family member research partners and community stakeholders involved in their five-year study. This included representatives and professionals from several organizations that help people with kidney disease or more broadly deliver healthcare services.

“From our interviews, we wanted to learn how COVID has impacted their lives and how their ability to engage in a research project,” Browne says. “We’re currently examining which research projects can help patients and family members participate as research team members because COVID is not going away anytime soon.

Prior to COVID, there was a big push in research to work with consumers, patients and their families as research partners in patient centered outcomes research. But people with kidney disease have a higher risk of bad COVID outcomes and are likely not able to leave their homes.”

All research has been affected since COVID-19 forced shutdowns, Zoom meetings and lack of in-person contact beginning last March. But Browne believes the opportunity to continue to work with people most impacted by kidney disease will have far-reaching impacts beyond the pandemic.

“For this study, we wanted to check on our research partners and see how COVID has impacted their ability to do the work of the research study because this population is at such a high risk,” Browne says. ‘We may have future pandemics or natural disasters where we’re unable to meet in person. This study also allows us to learn what researchers can do to work with patients and family members during difficult times.”