Two UNM researchers are taking a community-based approach to studying diabetes self-management for low income Hispanic patients, and they have a $2.3 million grant to fund their research.
Janet Page-Reeves, lead researcher on the study, said the pair previously worked on a smaller project where they concluded that there are many people in Albuquerque’s Latino community with diabetes, and there is a high rate of people who go undiagnosed.
Page-Reeves said the survey found that, out of 100 participants, 59 tested positive for diabetes or prediabetes but only 26 knew about their condition.
The study’s community lead, Lidia Regino, took that information and turned it into a program, which is in its fifth year. One Hope Centro de Vida Health Center offers a five-part class where patients learn about diabetes management from pharmacy or medical students and then meet with medical providers to discuss their individual management plan, she said.
“Over time, Lidia had identified that she felt their work at the clinic was having really...amazing results. They were seeing people change their behavior, they felt like it was really working,” Page-Reeves said.
So the pair decided to study the program’s success with a scientific approach, she said.
Their hypothesis is that a culturally and contextually situated health promotion program will be more successful for individual patients, Page-Reeves said.
“If you have diabetes and I tell you, ‘You should join a gym,’ but you are low income, that’s not going to happen,” she said. “If I tell you to walk in your neighborhood, but you live in a neighborhood where that’s not safe, that’s not going to happen.”
What people are told to do for their health has to fit with their capacity, Page-Reeves said, and that’s the contextual piece.
“The cultural piece is taking into consideration the things that are important to people in their lives, and not just telling them, ‘Oh, stop eating tortillas,’” she said. “That’s also just not going to happen.”
Both researchers are comparing UNMH’s diabetes management program with the program at One Hope. Both are good programs, Page-Reeves said, but the pair just wants to discover what works best for which people.
The study will run for three years and will include 240 patients. The researchers were awarded the grant money in November 2016, started gathering data in February and have finally worked out all of the bugs and are ready to tackle the project, Page-Reeves said.
Each patient is being asked to identify a person who is a “social support,” who will also participate in the study. This person will give researchers information about the patient, and about the relationship between patient and social support, she said.
The grant comes from the Patient-Centered Outcomes Research Institute, an organization created by the Affordable Care Act that does research on patient-centered issues of health, Page-Reeves said.
“To get funding from (PCORI) you have to engage patients in the process of doing the research, and you also have to choose two different things that have already been proven to work and you have to compare them,” she said.
Patient engagement began with the design of their research, as the two enlisted the help of a board, comprised of diabetes patients drawn from the population they’re studying, to help create the research question itself. They also hired their three data collectors from the population of study, Page-Reeves said.
“They actually got trained to do phlebotomy, because one of the components of this project is to draw blood,” Regino said. “We decided that it was important that the same person that was meeting with the patients was the same person that actually drew the blood.”
Training the data collectors was one of the challenges in designing the study, as they needed to learn behavioral health first aid and have access to a secure UNM database to enter information, she said. But hiring data collectors from the community will make it easier for patients to connect with them and ensure that staff interact patiently and respectfully with patients.
“We’ve had reports of places here in Albuquerque where people don’t receive that sort of respect when they go in,” she said. “This is a hard population to reach and connect with, because these are people that a lot of times don’t have good medical care, and they may not go to appointments.”
Language is another challenge for the researchers, as they believe information needs to be delivered in a person’s preferred language, Regino said. Data collectors also need to be bilingual.
“It was quite challenging to design the redcap data collecting tool because everything had to be done in Spanish as well. When we meet with the community participants, we have to take that into account,” she said. “It was quite challenging, but it’s doable because we are doing it.”
Since research can take a long time to deliver results, Regino said that patients involved in the study need to remain invested in the meantime. So in their meetings with patients, researchers also include information about diabetes and how patients can take care of themselves.
“This project is innovative because we are doing such an intensively community-engaged approach,” Page-Reeves said. “But it’s also innovative because using the community-engaged approach, our community advisors had such an impact on the design that we proposed.”
Cathy Cook is a news reporter at the Daily Lobo. She can be reached at firstname.lastname@example.org or on Twitter @Cathy_Daily.