ZUNI INDIAN RESERVATION, ZUNI, NM—We watched from folding chairs as a young man entered the room, his right side draped with a tan hide, a turquoise necklace around his neck. Two teenage girls followed in knee-high moccasins. Another young man stood in the middle, wearing a large, black-feathered headpiece, his gait and demeanor representing a proud bald eagle. We couldn’t understand the Zuni words of their chants, but the dance’s messages of tradition, honor, and respect were clear.
The young Zunis’ dance reflects the intensity of the tribe’s fight against the diabetes and kidney diseases that plague its people; to protect the community’s health is to perpetuate a long-standing culture. The tribe is getting help from researchers funded by PCORI. Our staff visited the reservation on November 8 to better understand how patient-centered outcomes research (PCOR) can address health issues of concern to racial and ethnic minority communities.
“Our P Stands for Patient”
We had begun considering that topic the previous day during our third Regional Engagement Workshop. The Power of Partnership in Research: Applying Patient-Centered Outcomes Research in Racial and Ethnic Minority Communities took place 153 miles east of Zuni, in Albuquerque, New Mexico. The workshop’s goal was to develop the PCOR community by bringing together local patients, clinicians, policymakers, payers, and other healthcare stakeholders. We hoped that these communities—bolstered by new knowledge about patient-centeredness in research—would engage in the research process, from topic generation to dissemination of findings.
We chose Albuquerque because PCORI’s work is not as well known in that part of the country. We’re working hard to change that, especially given the large percentage of Hispanic/Latino and Native American populations in New Mexico and nearby states. Racial and ethnic minorities are identified in our authorizing legislation as “priority populations” for our work.
The three PCORI-funded research teams featured at the workshop provided lessons about the creation, conduct, and culmination of PCOR projects. We also learned about grassroots efforts teams are using to develop genuine partnerships.
The foundation of PCOR in community-based participatory research (CBPR) was described by Vallabh “Raj” Shah, PhD, of the University of New Mexico (UNM) and principal investigator for the PCORI-funded project on the Zuni reservation. He said his community partners feel more comfortable with PCOR because the word participatory in CBPR implies that authority delegated to community members is less meaningful than that of the researchers. “Well, our P stands for patient,” said Anne C. Beal, MD, MPH, PCORI’s Deputy Executive Director and Chief Officer for Engagement, “and we take that quite seriously.”
C Is for Creating a Partnership
Workshop presenters noted various ways to create research partnerships. One strategy is for researchers to partner with an existing community organization. For example, INSIDE OUT is the partner in a PCORI-funded project in Espanola, New Mexico. That organization, formed and staffed by recovering addicts, provides services to other recovering addicts who “fall through the cracks in other agencies,” says founder Kathy Sutherland-Bruaw. As “people with lived experience,” staff connect well with those seeking support.
When Sutherland-Bruaw met UNM’s Annette Crisanti, PhD, they envisioned a new possibility for INSIDE OUT: evaluating peer-led treatment for PTSD and substance abuse, as compared with clinician-led treatment. So far, 19 patients are enrolled in the PCORI-funded study’s first cohort; 12 more cohorts will be added over the project’s three-year tenure.
Shah offered his own experience with the Zuni Indians as another way to create partnership: the researcher becomes embedded in the community. In 2013, Shah reported that end-stage renal disease is almost 20 times as prevalent in Zuni Indians as in the US population as a whole, and more than seven times as high as in other American Indian tribes. But, his interaction with the tribe did not stop there. He continues to drive two-and-a-half hours weekly to help members of the Zuni Pueblo conduct exercise programs for young people and trainings on diabetes management. Now, through PCORI-supported research, Shah and the community are studying whether home-based, peer-led care can prevent chronic kidney disease and decrease the incidence of end-stage renal disease in Zunis.
R is For Reciprocity as a Research Team
Throughout the workshop, participants asked, how can investigators and community partners share authority and build trust during a project? The partnership can take formal measures, such as budgeting for equitable compensation for patient partners. It can also have a straightforward commitment to patient partners being decision makers. For example, when we invited Flory Nkoy, MD, of the University of Utah, to speak, we suggested that he bring a patient partner. Rather than choosing someone himself, he asked the patient partners to select their representative. Nkoy’s project aims to enhance and test an electronic tracker intended to help pediatric patients and their families with asthma management.
Sutherland-Bruaw also testified to shared respect among Crisanti’s UNM research staff and the INSIDE OUT team. “[Crisanti] treats us as equals, she listens to us,” said Sutherland-Bruaw. “It works; that’s all I can tell you.”
W Asks, Who Owns the Data?
After a partnership is established and authority delegated, questions about data ownership remain. For example, Crisanti said that while the data her project is collecting may be reported to and used by other entities—such as New Mexico’s Department of Health—it belongs first and foremost to the community.
Zuni Governor Arlen P. Quetawki, Sr., mentioned during the workshop and site visit, that health data is a tool he needs to advocate on behalf of his community. However, his previous research experience was not always empowering. Because of “helicopter research”—where investigators come into a community, conduct a survey, publish a journal article, and leave—there was a distaste and distrust of medical researchers in Zuni. Quetawki happily noted that Shah takes a different approach. Using the information he collects from the Zuni Indians, along with his own expertise, Shah helps the Zunis discover sustainable ways to prevent diseases that threaten their livelihood. “I’m having impact because of them,” Shah says. “They know their people and community. I’m just a vehicle bringing resources.”
We at PCORI are confident that patient-researcher relationships will continue to grow. To encourage this trend, we’re undertaking new initiatives, such as our Engagement Awards. Through this funding mechanism, groups of nontraditional investigators, such as patient care advocates, community organizations, and policy makers, will build their capacity to take health research out of the lab and put it into the community.
We’ll continue to look for promising examples of community engagement in rigorous comparative effectiveness research and bring what we find to your attention. That’s one way to show how we take the “P” in PCORI seriously.
Brown is a Program Associate on PCORI’s Engagement team.
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