Research takes place throughout the WWAMI region

… at universities, in community-based clinics, and on reservations. It’s all part of a practical, multi-state initiative for providing better medical care in our communities.

Take this real-life example from Pocatello Family Medicine at Idaho State University, where a woman of child-bearing age had been prescribed a medication for high blood pressure.

Although she wasn’t pregnant, the clinic could see a potential conflict: the drug, lisinopril, might be harmful to a fetus. Staff wondered: how many of our other patients are in a similar position?

The trial balloon

Enter the Institute of Translational Health Sciences (ITHS) — specifically, Laura-Mae Baldwin, M.D., Res. ’84, MPH, the director of the ITHS’s WWAMI Region Practice and Research Network.

Baldwin and colleagues in the Department of Family Medicine, Al Berg, M.D., MPH, Res. ’79, and Gina Keppel, MPH, had begun to collaborate with the 18 resident training programs in UW Medicine’s WWAMI-based Family Medicine Residency Network. These sites were interested in community-based research, and the question about lisinopril (and other medications with similar potential effects) provided the trial balloon they needed.

In all, seven clinic sites signed on to the project, and staff, residents and fellows gathered information from more than 300 female patients. The data showed that other women were affected by prescription choices, and the clinics worked together to improve treatment.

“We identified the question,” said Rex Force, Pharm.D., a researcher at Pocatello Family Medicine in Idaho. “Then the collaborative process kicked in. The team at ITHS supported our idea and scaled it up to involve the network. It was a great experience.”

“[The project] wouldn’t have been possible if we had only done it at a single site,” says Baldwin. “We designed the project together, collected and analyzed the data together, reviewed the results together, and then presented the data to the [other] sites together,” she says.

Laura-Mae Baldwin, M.D., and her collaborators conduct community-based research to improve care for patients in the five-state region of WWAMI.

Community data

Dedra Buchwald, M.D. (left), and Karina Walters, Ph.D., discuss future research collaborations with Native communities.

The WWAMI Region Practice and Research Network, led by Baldwin, is one arm in the ITHS’s Community Outreach & Research Translation Core (CORT). CORT utilizes the power of community research to “translate” medical discoveries into therapies that help patients. Dedra Buchwald, M.D., leads the second arm of CORT, the American Indian/Alaska Native Community Outreach & Research Translation Core. A third arm is located at Group Health in Seattle.

“Without this kind of research, you can’t effect change in the health of communities,” says Leo S. Morales, M.D., Ph.D., MPH. Morales is co-director of CORT, an associate investigator at the Group Health Research Institute, and an associate professor of health services at the UW.

Although the three arms of CORT collaborate with different clinics and populations, they meet regularly to talk about pilot programs and learn from one another. And they’re working with Kari Stephens, Ph.D., and Ching- Ping Lin, Ph.D. ’10, from the ITHS Biomedical Informatics Core to bring a program called LC Data QUEST to clinics in the region.

LC Data QUEST pulls standardized data from electronic medical records, allowing the collection of HIPAAcompliant research data within and among clinics for approved studies. In addition to serving as a powerful data collection tool, the program can help doctors manage health screening and chronic disease — it issues automated care reminders and instructions for patients who meet certain medical criteria.

Eliminating the gap

One of the next subjects that Baldwin and her colleagues plan to tackle — with Beverly Green, M.D., MPH, of the Group Health Research Institute — is blood pressure. Using a web-based model developed at Group Health, they’ve written a grant to test whether community pharmacists can help patients with hard-to-control blood pressure. The protocol worked well at Group Health. With modifications, says Baldwin, it should work in the WWAMI region.

Research topics like this one, which address urgent problems in primary care, are of great interest to practitioners like Jeff Kaplan, M.D., medical director of Memorial Physicians Group in Yakima, Wash. He and his colleagues anticipate partnering in the blood pressure study. “We’re looking for ways to change the ways we provide care,” he says, to make medicine more efficient and less costly.

With the work of partners like Kaplan, Green and Morales, and with support from the ITHS, research funding is helping ensure that medical discoveries reach everyone — eliminating the gap between laboratory and clinic.

“The gap occurs when there isn’t a good mechanism for disseminating research in communities,” Morales says.

Baldwin agrees. “If we used the strategies we already know work, and implemented them in communities to their full extent, we would have a much greater impact on health,” she says.

Health disparities

Dedra Buchwald, M.D., UW professor of medicine in the Division of General Internal Medicine, remembers an early meeting of the ITHS, where members discussed potential partners for community-based research. There were many choices, she says, given the enormous breadth of WWAMI — roughly one-quarter of the American landmass.

Buchwald, who has worked with American Indian and Alaskan Native communities for more than 20 years, suggested that the ITHS focus on those groups. Given a broad range of challenges and special circumstances, including poverty, poor health literacy, limited educational opportunities, widely dispersed populations, and the need to respect tribal sovereignty, American Indian and Alaskan Native communities suffer from major health disparities.

“If we can make a difference with this population,” argued Buchwald, “we can make a change for the better in almost any population.” Her colleagues agreed, and the American Indian/Alaska Native Community Outreach & Research Translation Core was launched.

Buchwald mentions the success of one ITHS-funded project that focuses on the use of graphic materials to increase health literacy in Native populations. She is developing other projects as well; some are funded by the ITHS, while others are funded by major grantors concerned with issues such as cardiovascular disease, cancer and hepatitis C in Native populations.

Buchwald notes, however, that there’s a challenge in conducting research with tribal communities or other small populations prevalent in WWAMI: numbers. How do you maintain the anonymity of a 90-year-old study participant if, for instance, there are only a handful of 90-year-olds in a tribe?

One answer may be partnering with other tribes to increase the numbers of study participants. Another is conducting qualitative research instead of quantitative. Buchwald hopes the year ahead — with the help of grants from the ITHS and the National Cancer Institute — will provide some answers.

Broken promises, broken hopes

If numbers provide a challenge in working with Native populations, so do other circumstances. Ron Whitener, J.D., a UW senior lecturer in law, executive director of the UW Native American Law Center, a graduate of Buchwald’s two-year fellowship for Native health researchers, and a member of the Squaxin Island Tribe, explains.

In conducting “bench-to-bedside” research — shorthand for taking information gained at the lab bench and translating it into medicine or therapies that help patients — a scientist recruits patients and follows protocols. Working with tribes, he says, adds another layer for the researcher. “You have an overlay of a sovereign government,” he says, referring to the U.S. government’s recognition of American Indian tribes as sovereign nations. This extra layer can lead to misunderstandings.

First, researchers and tribes may not agree on the importance of the researcher’s topic — or the tribe’s need to invest in it. Second, some researchers may not want the tribes to have a say in the research or the manner of its publication, though such requests are well within tribal rights. Then there’s the problem of history.

“Tribes have been researched to death in the U.S.,” says Whitener, often with poor outcomes. For instance, some researchers have overpromised the benefits of their studies, haven’t followed up with a tribe, or have broken contracts. Even so, says Whitener, tribes remain interested in research.

“They want to be involved,” he says. “But it has to be done in a respectful manner.”

The people and the research

Karina Walters, Ph.D., agrees that a respectful approach is key to working with Native populations. She’s the director of the UW Indigenous Wellness Research Institute (IWRI), a professor in the UW School of Social Work, and a member of the Choctaw Nation of Oklahoma. And she may soon be the newest collaborator in the ITHS’s American Indian/Alaska Native Community Outreach & Research Translation Core.

She and Buchwald have collaborated on projects and have shared resources and information — “Indian country is small, and we all do a lot of work together” — but another level of integration could raise the work in WWAMI to a new level.

Instead of the bench-to-bedside approach, says Walters, “what we would bring is the community-tobench approach,” where research is informed by tribal participants.

Walters makes her point by recalling one of her own cases. Elders from a tribe in Washington, concerned about their children — some of whom were contracting type 2 or adult-onset diabetes — contacted her for help. At the same time, the elders made sure Walters knew that they viewed being overweight as part of their culture.

First, Walters — an expert in the social and historical determinants of health — did some research. She found old tribal photos that showed a lean, fit people. Then she met the elders to talk about their “original instructions,” or the rules set out by their ancestors. Each person in the room said the same thing: that the instructions had changed when the tribe was moved to a reservation. No longer allowed to hunt, fish or travel, they were struck by famine. To keep their babies alive, the tribe overfed them when they could feed them at all.

It was an “aha” moment for the elders, says Walters, where they realized that a historical survival strategy — made in response to major, negative shifts in their way of life — was no longer useful.

A new twist on a good model

Walters and her colleagues could bring a wealth of knowledge, ideas and approaches to work with the ITHS. And like Baldwin and Buchwald and their colleagues, Walters believes strongly in research collaboration in the WWAMI region.

Collaboration is key to communitybased research. If researchers have something to bring to the table, so do the communities with whom they work. It’s a new twist on a good model: making sure new and workable ideas in medicine are translated out in the field.

“What we’re saying is, we’ve got some knowledge,” says Walters. “But our communities also have some knowledge — how do we have these things work together?”

By Delia Ward