CTSI Focuses on Rural Health Research – UBNow: News and Views for UB Faculty and Staff

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    View of a tree lined country road.

By CHRISTOPHER SCHOBERT

portrait of Katia Noye.

Researchers at UB’s Clinical and Translational Sciences Institute (CTSI) and their community partners share the importance of rural health research and lessons learned.

“In New York State, rural poverty is a long-standing issue,” says Ekaterina Noyes, director of the Division of Health Services Policy and Practice, science team leader at CTSI; 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 areas of New York, and they are often unknown and invisible,” adds Noyes.

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 although rural populations are dispersed, “the incidence of [chronic] diseases such as diabetes, cancer and chronic obstructive pulmonary disease is high. Cerny often collaborates with Noyes, and together they have worked to highlight the impact of poverty in rural communities as well as the importance of inclusive research.

These questions are also fundamental to the work of Thomas C. Rosenthal, a graduate of the Jacobs School of Medicine and Biomedical Sciences who chaired the Department of Family Medicine from 1994 until his retirement in 2013.

As noted in a 2020 Jacobs School paper, Rosenthal spent eight years as a family physician in the farming community of Perry in western New York and was instrumental in the creation of the Jacobs School Rural Health Campus, the Rural Health Division. He points out that simply living in rural communities is not the key factor in why some of these residents live in poverty.

Thomas C. Ricketts, III, a senior policy researcher at the Cecil G. Sheps Center for Health Services Research at the University of North Carolina, overlaid poverty statistics and measures of rurality and found that nearly all Rural problems can be traced to poverty — rurality was a secondary issue, Rosenthal says. The 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’s a general feeling of independence: ‘If I can’t do it myself, I shouldn’t be here.’ This concerns the repair of one’s own plumbing as well as the fight against diseases.

The second generalization, he says, is that “Rurals approach every encounter with the thought that the interaction can have a past, a present and a future. This is why the first encounter with a rural person often begins with “are you related to…” or “do you know…” — rural people expect paths to cross again and the establishment of a relationship is important for future encounters.

It is also essential to understand rural communities to analyze the health disparities and barriers to health that exist there. These include:

  • Access to health care providers, as well as difficulties in traveling to areas like Buffalo for treatment.
  • Consolidation and hospital closures in rural areas in recent decades.
  • High incidence rates of domestic violence and, as mentioned earlier, chronic illnesses.
  • Lack of access to broadband and wireless hotspots, which limits telehealth options.

“The rural health system is nearly exhausted, and the providers who have held on are very protective of their patients,” Rosenthal says.

Barriers to rural health research

Given the health issues and poverty that exist 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 one of the biggest problems with research in rural areas is identifying trusted partners. His findings show that trusted partners can include city supervisors, local pastors, and even individuals like librarians.

Noyes advises researchers to consider the higher cost of research in rural communities.

“Most suburban healthcare clinics have someone to make phone calls and follow up with patients. [including research study participants]. Rural clinics may not have this capacity. Thus, researchers will need to bring their own data managers, nurses and evaluators,” and the associated costs will need to be factored into research budgets.

Similarly, geographical barriers in rural areas are forcing researchers to rethink how to conduct surveys.

Rosenthal adds that access is one of the biggest barriers: “If you can’t afford the treatment, access is a problem. If you have to drive two hours, access is a problem. If your daughter needs to take the day off to take you on a date, access is an issue. Throw too many obstacles and the patient gives up.

Advice to researchers

Rosenthal says researchers interested in conducting rural health research need to understand the “why” — in other words, why someone decides 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 emphasizes that individuals need to be “intimately included in the process” so that they fully understand why their participation in a research project is important. The most important conclusion, says Cerny, is “one word: listen.”

Noyes agrees that paying attention to the voice of the community is essential. She also echoes Cerny’s thoughts on building trust. “Find someone who can introduce you to the community. They don’t even have to be researchers. Opening this door changes the tone of the conversation. You can’t develop solutions if you don’t really understand the problem and the reason for what may be happening.

As director of CTSI’s Team Science Core, Noyes has a deep understanding of the importance of collaboration. She sees it as a tool for researchers implementing clinical trials in rural communities. “Team science isn’t three doctors working together,” says Noyes. “It’s much broader than that – and community partners play a vital role on research teams.”

Cerny points to a recent ROC collaboration with the county health departments of Allegheny, Cattaraugus, Chautauqua, Erie, and Wyoming regarding the use of a public health fellowship program, in which “fellows identify, then attempt to finding solutions for rural health disparities. With this example and others, Cerny has “hope for even more collaboration in the future.”

Working with rural healthcare providers has proven fruitful for Rosenthal. “We have had success involving primary care physicians and their staff in the project,” he explains. “It has always amazed me how positively people respond to a cry 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 the articles in a series co-edited by Noyes.

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