By CHRISTOPHER SCHOBERT
Investigators from UB’s Clinical and Translational Science Institute (CTSI) and their community partners are sharing the importance of rural health research and lessons learned.
“In New York State, rural poverty is a long and ongoing issue,” says CTSI Team Science Core Director Ekaterina Noyes, director, Division of Health Services Policy and Practice; director, MPH concentration in health services administration; and professor, Department of Epidemiology and Environmental Health, School of Public Health and Health Professions.
“There are 2.5 million people who live in rural New York, and they are often unheard and unseen,” Noyes adds.
Frank Cerny is executive director of the Rural Outreach Center (ROC) in East Aurora, an organization dedicated to breaking the cycle of rural poverty. Cerny says that while rural populations are dispersed, “The incidence of [chronic] diseases like diabetes, cancer and chronic obstructive pulmonary disease is high.” Cerny collaborates often with Noyes, and together they have worked to highlight the impact of poverty in rural communities as well as the importance of research inclusion.
These issues are also fundamental to the work of Thomas C. Rosenthal, a Jacobs School of Medicine and Biomedical Sciences graduate who chaired the Department of Family Medicine from 1994 until his retirement in 2013.
As outlined in a 2020 Jacobs School feature, Rosenthal spent eight years as a family doctor in the Western New York farming community of Perry, and was instrumental in establishing the Jacobs School’s rural health campus, the Division of Rural Health. He stresses that simply living in rural communities alone is not the key factor in why some of these residents are living in poverty.
Thomas C. Ricketts, III, senior policy fellow in the Cecil G. Sheps Center for Health Services Research at the University of North Carolina, overlaid poverty statistics and rurality measures and found that almost all rural problems can be attributed to poverty — rurality was a secondary issue, Rosenthal says. Researchers believe the factors at play here are much more complex.
Understanding rural communities and barriers to health
Noyes describes both Rosenthal and Cerny as passionate rural health advocates who have made an impact at UB and throughout New York State.
“Sociologists tell us that there are two generalizations that can be made about rural culture,” Rosenthal says. “First, there is a general feeling of independence: ‘If I cannot do it myself, I should not be here.’ This relates to fixing one’s own plumbing as well as fighting disease.”
The second generalization, he says, is that “rural folks approach every encounter with the thought that the interaction may have a past, a present, and a future. This is why the first meeting with a rural person often starts with ‘are you related to …’ or ‘do you know …’ — rural folks expect that paths will cross again and that establishing a relationship is important to future encounters.”
Also vital to understanding rural communities is analyzing the health disparities and barriers to health that exist there. These include:
- Access to health care providers, along with the difficulties in traveling to areas like Buffalo for treatment.
- Hospital consolidation and closures in rural areas in recent decades.
- The high incidence rates of domestic violence and, as previously mentioned, chronic disease.
- The lack of broadband and hot spot access, which limits telehealth options.
“The rural health system is stretched to near breaking, and those providers who have stuck it out are very protective of their patients,” Rosenthal says.
Barriers to rural health research
Given the health issues and poverty that exists in rural communities, it is clear that research that includes rural New Yorkers is essential. However, just as there are barriers to health, there are barriers to health research.
Cerny says that one of the key issues in doing research in rural areas is identifying trusted partners. His findings show that trusted partners can include town supervisors, local pastors and even individuals like librarians.
Noyes advises researchers to consider the higher cost of doing research in rural communities.
“Most suburban health care clinics have someone to make phone calls and follow up with patients [including research study participants]. Rural clinics may not have that capacity. So, researchers will have to bring their own data managers, nurses and evaluators,” and the associated costs will need to be factored into research budgets.
Similarly, geographic barriers in rural areas necessitate researchers re-thinking how to conduct surveys.
Rosenthal adds that access is one of the most significant barriers: “If you can’t afford treatment, access is an issue. If you have to drive two hours, access is an issue. If your daughter must take a day off of work to get you to an appointment, access is an issue. Throw in too many barriers and the patient gives up.”
Advice for researchers
Rosenthal says that researchers interested in conducting rural health research need to understand the “why” — in other words, an individual’s reason for deciding to participate in a clinical trial. “They want to realize a practical benefit, so the research question has to come from their experience,” he explains.
Cerny stresses that individuals need to be “intimately included in the process” so that they have a full understanding of why their involvement in a research project is important. The most important takeaway, Cerny says, is “one word: listen.”
Noyes agrees that paying attention to the voice of the community is key. She also echoes Cerny’s thoughts on trust-building. “Find someone who can introduce you to the community. They do not even have to be researchers. Opening that door changes the tone of conversation. You cannot develop solutions if you do not truly understand the problem and the rationale for what may be going on.”
As director of the CTSI’s Team Science Core, Noyes has a deep understanding of the importance of collaboration. She sees it as instrumental for investigators implementing clinical trials in rural communities. “Team science is not three PhDs working together,” Noyes says. “It is much broader than that — and community partners play a critical role in research teams.”
Cerny points to a recent ROC collaboration with the departments of health in Allegheny, Cattaraugus, Chautauqua, Erie, and Wyoming counties regarding the use of a public health fellowship program, in which “fellows identify, and then try to come up with some solutions to rural health disparities.” With this example and others, Cerny has “hope for even more collaboration moving forward.”
Collaborating with rural health providers proved successful for Rosenthal. “We had success by involving primary care doctors and their staff in the project,” he explains. “It always amazed me how positively people respond to a plea for help.”
To learn more about barriers to health care and health research in rural communities, read “Challenges for the Provision of Guideline-Recommended Cancer Care to Rural and Medically Underserved Communities,” one of a series of articles co-edited by Noyes.