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Past Opportunities to Provide Input
- PCORI's Proposed Research Agenda (2021-2022)
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Comment on the Proposed New and Revised PCORI Methodology Standards (2016)
- 1. Standards for Formulating Research Questions
- 10: Standards for Studies of Diagnostic Tests
- 12. Standards on Research Designs Using Clusters
- 13: General Comments on the Proposed Revisions to the PCORI Methodology Standards
- 2: Standards Associated with Patient-Centeredness
- 3: Standards for Data Integrity and Rigorous Analysis
- 4: Standards for Preventing and Handling Missing Data
- 5: Standards for Heterogeneity of Treatment Effects
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- 7: Standards for Data Networks as Research-Facilitating Structures
- 8. Standards for Causal Inference Methods
- 9. Standards for Adaptive Trial Designs
- Peer-Review Process Comments (2014)
- Draft Methodology Report Public Comment Period (2012)
- Past Opportunities to Provide Input
Native Americans have the highest rate of diabetes of all US racial and ethnic groups. Around 16 percent of American Indian and Alaska Native adults have been diagnosed with that condition, according to the Centers for Disease Control and Prevention. That’s more than twice the prevalence in non-Hispanic whites. Diabetes increases the risk of devastating complications such as heart disease, kidney failure, liver disease, and need for amputations, and Native Americans have higher rates of these problems than do other Americans with diabetes.
One of PCORI’s national research priorities is Addressing Disparities, a topic of particular interest in April, National Minority Health Month. PCORI funds a variety of projects to overcome barriers to good health and health care experienced by Native Americans. We work on two PCORI-funded projects that focus on diabetes among people living in the Navajo Nation, a territory covering parts of Arizona, Utah, and New Mexico.
One of these studies is examining a community health project in which trained laypeople, known as community health representatives, reach out to coach people in their communities and help coordinate care. In the study, researchers are interviewing Navajo people who have successfully prevented or managed diabetes to find out whether, and how, community health representatives played a role. The researchers are also comparing health outcomes of people with diabetes who have and have not worked with community health representatives.
The other study combines data from electronic health records of the Navajo Nation and other sites around the country served by the Indian Health Service (IHS). Its goal is to improve health outcomes among American Indians with diabetes and cardiovascular disease. The research team will evaluate the effects of education and health services on patient outcomes to help patients make informed choices.
In these studies, we have encountered challenges specific to the Navajo Nation, but input from the community has strengthened our work. In turn, we are providing the local communities with data analyses to help them improve the health care they provide. As members of the two study teams, we have found that collaborating with each other improves our analyses.
We talked with PCORI about:
- Navajo Nation Challenges
- How Navajo Input Helps With Research
- How Data Sets Help Local Communities
- How Collaborating Improves Data
Challenges of Providing Health Care and Doing Research within the Navajo Nation
Sonya Shin, Principal Investigator: Because many of the communities are rural, there are geographical challenges with access to health clinics. Most of the roads are not paved in the Navajo Nation, which is the size of West Virginia. The Navajo Area IHS has 12 healthcare centers there.
Joan O’Connell, Principal Investigator: One thing we’ve done is map out how far it is from people’s homes to the health clinics. Healthcare providers need to take into account that many of the patients they serve have very low incomes and live far from hospitals and clinics.
Shin: A lot of health care should be based in the community rather than delivered in the clinic. We want to give community health representative programs the tools they need to deliver effective health coaching and coordinate it with clinical teams. We’re hoping that with the community health program, the clinical outcomes do improve and people use the healthcare system in a more effective way. That means going to primary care doctors more regularly, rather than winding up in the emergency room or being hospitalized.
Olivia Muskett, Qualitative Researcher: In our study with Dr. Shin, before we did any interviews in homes, we had to go to that community and attend what they call a chapter meeting to get permission to do interviews there. Then we went to the homes to do interviews. I had to go to each home at least twice, first to introduce myself and get permission, and second to ask the interview questions. Sometimes I had to go several times, to try to catch them when they’d be home.
Sometimes we would find out that someone we had arranged to interview was staying with a relative in a different community. Then we’d have to ask them if we could meet them in their previous community because that was where we’d gotten permission to do interviews.
Navajo Input Helps With Research
Olivia Muskett, Qualitative Researcher: I did 9 interviews, 14 if you count family members. I believe only two of the interviews were in English. The rest were all in Navajo.
Kimberly Huyser, Data Analysis Researcher: I know from conversations with my elders that they don’t always feel the things that they’re told to help manage their diabetes really resonate. Doctors brand-new to the reservation don’t necessarily realize, for example, that access to fruits and vegetables can be difficult. Our elders need someone to tell them, what are healthy alternatives given the restrictions that they’re living under? How can we make meaningful change even if we can’t do the ideal change?
Especially thinking about the spread of rural communities, having lived there is helpful. I was the oldest of five. When my brother was a toddler and we were living in a small community, he fell and hit his head and got a huge gash. My parents had to drive 45 minutes to get to the closest ER to get him stitched up. For us even to go to our preventive checkups, my parents had to strategize. Whenever we drove to town, it was a big deal.
With diabetes management, it’s important to know that structurally, it can be difficult. If you’re driving multiple hours to a clinic, you’re not going to go there weekly.
Muskett: I lead the community health advisory panel for our study. We started by asking the members, is this research appropriate? How do you want to see this research done in the Navajo Nation?
There were some study questions that we had to revise. Some of it was the way we ask the questions. They didn’t want us to ask questions that would create conflict or appear to be negative. For a lot of people in the community, if you don’t word a question in the third person, they feel like you’re bringing that illness on them. We had to make sure that we weren’t saying things like, “Since you’re diabetic...” We tried to reword the question to say, “Diabetes is a problem throughout Navajo Nation.”
Data Sets Help Local Communities
Joan O’Connell, Principal Investigator: We are collecting healthcare data from 15 sites throughout the United States. The majority of sites don’t have the software tools or enough staff with experience to analyze the data. We are supplementing the healthcare data with other data, like US census data, to examine the influence of education, income, and other characteristics on health and service utilization. We provide information back to local sites, including the two in the Navajo Nation, so that they can use it for their purposes.
For example, one site reviewed information for patients who obtained diabetes care and education. They could see that they were getting patients in for one visit, but not for two, three, or four visits. They felt they couldn’t have much of an impact with one visit. They are now conducting more patient outreach, such as making more phone calls and enhancing home-based services.
Kimberly Huyser, Data Analysis Researcher: In the data, we see different health outcomes by clinic. Some of the things we can explain by the resources in the clinics themselves. But we also know that the resources in the community really matter. If we are able to find out that a community has higher education or the family structures are different, that might lead to mechanisms for better providing care.
Collaboration Improves Data
Joan O’Connell, Principal Investigator: Even though our projects are quite different, they both include data analysis. We discuss issues related to the analyses. For instance, one Navajo Nation site transitioned to a new electronic health records system. We developed a method to ensure we did not double-count services during the transition. We’ve also both worked on ways to identify if a single patient had more than one patient number at different clinics or hospitals, so that we can say which numbers are for the same person.
Sonya Shin, Principal Investigator: Patients move around. When they’re hospitalized in one place, they’re discharged to follow up with a primary care provider somewhere else. At a fundamental level, interventions have to be regional and connect different facilities.
We also really want to make sure we understand the similarities and differences between our analytic approaches. If we were to sit down with a local advisory group, many of those people would be the same for both studies. If we’re coming up with different cost estimates or health utilization estimates, it has to be very, very clear how our approaches are similar and different.
O'Connell: We’ve talked about scheduling a joint meeting on the Navajo reservation to share our work, so that providers and the community can better understand these findings and use them to inform their own work. There is a Navajo tribal epidemiological center, which conducts analyses of the health status of their population. There’s a real opportunity for us to collaborate with them to better address their own priorities.
The views expressed here are those of the author(s) and not necessarily those of PCORI.
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