A Better, Healthier Life

The Prevention Research Center is working with communities and families to help solve their healthcare problems..

by Cindy Foster

Prevention researchers seek to identify what works best in changing behavior and the environment in ways that promote health and prevent disease. What better way to do so than to involve, from the beginning, the people directly impacted by the research?

Today, every research project within the Prevention Research Center at the University of New Mexico Health Sciences Center routinely incorporates the voice of the community. However, the practice of involving communities as partners in research has been one of the most controversial issues during the past 20 to 30 years.

For researchers and funding agencies, the questions surrounding such research seemed endless. How would a community’s knowledge of a research project impact the project’s outcome? Wouldn’t involving the community, by definition, lead to a dilution of pure research? How are academic scientists to deal with such pragmatic, modern-day challenges as local politics or deciding which members of the community should be selected to participate?

"Solving those problems so that communities could become true participating partners is partly what drew me to the field," says Sally Davis, Professor in the Department of Pediatrics, Chief of the Division of Health Promotion and Disease Prevention, and Director of the Center for Health Promotion and Disease Prevention (CHPDP) in which the Prevention Research Center is housed.

"The entire idea of involving the community was controversial. There wasn’t much written about the participatory community approach, but we knew this was the direction we needed to go – and it was the direction communities wanted to go," Davis says.

Davis had come to the UNM School of Medicine to develop a school health component to help pediatric residents understand the world their young patients inhabited. In pediatrics, it is especially important to incorporate the family into the care of any patient. For instance, successfully changing a child’s eating and exercise habits requires changing the habits of the entire family.

And as challenging as these projects might be in large metropolitan areas, there were different challenges in New Mexico, in rural areas, and especially in American Indian communities.

In the past, American Indian communities had suffered from the results of some research projects and were hesitant to participate in any further studies. Many felt exploited as academics made careers out of studying American Indians without giving anything of value back. Yet the community members, like parents, still wanted a better, healthier life for their children.

After Davis received a large grant from the National Heart, Lung, and Blood Institute, teams of researchers began working under her direction around the state. One of the biggest benefits, they realized, was that people in the communities saw UNM as being unbiased.

"There is a neutrality people recognize when your focus is on the health of families and kids," she says. "Once schools and communities became aware that resources were out there, they began to approach us to ask if we would be involved in local health programs, especially in the schools."

Another key to success was recognizing that the programs had to be specifically tailored to each community’s needs.

"It’s important, before working with communities, to determine how the potential results of the study will benefit the communities, and to respect the beliefs and customs of the people," she says. Equally important is holding feedback sessions afterward so that people can know what has been learned.

"Ultimately, if you are going to be successful, you must work in ways that connect with a community’s knowledge, attitudes, and values," she says.

Davis is adamant that research must meet high standards. "We turn down opportunities all the time because we don’t think it’s good science. To do otherwise would dilute our role and compromise our relationships with the communities," she says. "You have to design research that is rigorous and solid and meets the needs of the community."

The mid-1990s saw the initial funding of the UNM Prevention Research Center. Today, it is one of 28 centers in the nation funded by the Centers for Disease Control and Prevention to conduct innovative health promotion and disease prevention research, and is the core of CHPDP.

At any given time, there are 55 to 65 people employed by the Center and 12 principal investigators in charge of research project grants. A generation of researchers at the Center has trained by participating in prevention research at UNM and within communities around the state. Research projects have included topics such as preventing obesity and diabetes in school-age students and understanding the "functional values" of tobacco for New Mexico American Indian adolescents, meaning the social and cultural values that these youths attach to tobacco use. Another major initiative is the study of the utilization of research in practice and policy. Two new upcoming studies include smoke-free families and diabetes prevention in middle-school-aged children.

The next step, Davis says, is working with communities to increase skills needed to advocate for the health issues that are important to them as they deal with local, state, and federal governments. While this is a new direction, researchers at the Center have a foundation to work from: gather input, ask the community what is important to them, and then listen to their answers.

"You don’t compromise integrity, ethics, honesty, or management, and you don’t compromise the integrity of the community," Davis says. "It can be slow, it can be frustrating, but as trust grows on both sides it can develop into something rich and meaningful for all participants."