Transforming Community-Based Research on the High Plains

A Mexican Day of the Dead skull with the message “Shhh…High Blood Pressure, Silent but Deadly” dominates a poster on a community bulletin board. Denver residents take note. In a rural community, a cloth shopping bag says, “Just check it: the engine oil, the weather, your crops, your blood pressure, your tire pressure, the time, the stove is turned off, the fences....” And “your blood pressure” is in large red letters. The outreach products were designed by teams of medical researchers and community members to make health research more meaningful and accessible to patients and others in a variety of Colorado locations.

Maret Felzien, a junior college reading specialist and fourth-generation farmer and rancher, is one of the community participants in the health-promoting activities. She serves on the Community Advisory Council of the High Plains Research Network (HPRN), which is made up of rural hospitals, clinics, and primary care practices covering the 16 counties of eastern Colorado.

HPRN’s director Jack Westfall, MD, leads the organization's efforts to translate evidence-based health recommendations into language easily understood by the people the network serves. “In eastern Colorado, this means presenting information in a way that incorporates the local rural, ranch-and-farm flavor,” he says.

“Community members and patients are more engaged when the evidence-based guidelines get translated into local language and concepts,” Westfall explains. “They quickly see how a message is relevant to them and their families.”

PCORI is interested in how the HPRN carries out its work and how what it has learned might be applied elsewhere. So it funded a pilot project in which HPRN, in conjunction with the University of Colorado in Denver, extended its community partnerships to form groups to identify local health priorities and produce tailored communications to guide patients.

Westfall was originally the principal investigator on the project. He recently left that position, although he is still fully engaged in the project. Larry A. Green, MD, of the University of Colorado School of Medicine, took over as principal investigator.

The community groups selected by HPRN identified the following health priorities:

• Mental and behavioral health in eastern Colorado
• Cancer survivorship for rural eastern Colorado
• Diabetes self-management in rural and urban Colorado
• Infant oral health for rural and urban Colorado
• Hypertension self-management among Denver African Americans
• Hypertension prevention and self-management among Denver Hispanics/Latinos

Two groups addressed the last topic, one to produce materials in English, such as the posters, and the other to create messages in Spanish.

HPRN had previously developed an approach, called Boot Camp Translation, to support research activities and produce health-promoting materials effective for a given population. In projects involving more than 1,000 rural community members and healthcare providers, this strategy had succeeded in increasing rates of colon cancer screening, decreasing rates of high blood pressure, and improving care for asthma.

During Boot Camp Translation, groups of researchers, doctors, and community members participate in single-day retreats and conference calls. The team identifies medical experts who educate each group about evidence-based practices that apply to its selected issue. Then the groups translate the information into effective messages and develop dissemination plans.

“The questions that we ask, the further info that we feel like we need, the details that we don’t quite understand are really valuable for the researchers and medical community,” Felzien says. They get insight into where the communication process breaks down when they are talking to their patients, why the patients don’t follow through on instructions, and what concepts the patients or the community don’t seem to understand.

In the conversation with researchers, well-informed community members provide practical and relevant feedback into how the team can create materials that are relevant and user friendly. They help the team put together an action plan that speaks directly to the targeted group. Working in this way, says Felzien, “feels very grounding, feels very useful, and it’s fun. You get to give opinions. Have you ever known a group not to want to give opinions about something?”

Community members, for example, provided an “Ah-hah!” moment for researchers during a project on hypertension. Patients complained that they were asked to take blood pressure measurements several times a day and report the results to a nurse, but they weren’t involved in the decisions that resulted from that data.

With the help of tool kits developed by the boot camp, nurses and patients learned how to together examine the measurements in relation to the patient’s diet and activities. “The conversation changed dramatically,” Felzien reports. And the patients became more enthusiastic about taking and reporting blood pressure measurements. “It was a nurse’s dream to have patients over-comply,” Felzien says.

Community input has been intrinsic to HPRN function for more than a decade. HPRN’s Westfall, a family physician and native of Yuma, Colorado, established the research network in 1997. However, the original partnership of local healthcare practices seemed incomplete. Westfall says, “We all felt that something was missing. We needed community input and engagement.”

So HPRN added an advisory council, which today includes Felzien and 16 other members, ranging from high school students to octogenarians. The council helps identify research questions, assists in the design and implementation of studies, and disseminates results throughout the community.

“The PCORI project is an extension of work we’ve already been doing. It’s a way to figure out if the method we have been using is actually something that is replicable and something we can document and say that this is a process that works,” Felzien says.

HPRN and its Community Advisory Council are demonstrating a new model for health research that can be adapted for use in communities nationwide, Westfall says. “My vision is to have patients, local residents, healthcare providers, and researchers all working together to ask and answer questions important to the community.”

Posted: September 16, 2013