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It takes a village (to research a village)
Residents of the wildfire-choked San Joaquin Valley desperately want something done about their air quality—but they want researchers to approach the work in a new way.
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Photo: Levi Meir Clancy/Unsplash
Manali Patel’s plan was a no-brainer: Help low-income residents of the San Joaquin Valley get diagnosed for cancer and into treatment.
As a professor of oncology, Patel knew that cancer rates in the region were higher than average, and access to care was limited. As founder and director of the Partnerships to Advance Cancer Care lab, which incorporates deep community engagement to build equitable access to cancer treatments and other health care, Dr. Patel and her team had worked on other projects for farmworkers in Monterey County. So, during an appointment with one of her patients from the valley, she mentioned the idea.
To her surprise, her patient was dubious. Why was Patel focusing on cancer? he wanted to know. Cancer was a symptom. The problem was the air.
Air quality in the San Joaquin Valley is some of the worst in the country. Oil and gas rigs dot the valley floor. Local farms set fire to their fields after harvest. Residents have organized, with significant success, for stronger regulation of oil and gas infrastructure, and an end to burning in the fields. But in recent years the valley had begun filling with smoke from a new source: wildfires, spurred to record-breaking size and intensity by a changing climate. How could you even respond to something like that? You can’t ban a wildfire.
Patel focused on cancer because she’s an oncologist, as well as the founder and director of the Partnerships to Advance Cancer Care at Stanford. But she’s an oncologist with a degree in public health. And while getting that degree, she’d developed a deep commitment to something called “community-engaged” or “participatory” research. Instead of just dispensing advice to patients, she’d become the kind of doctor who would ask for it.
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A farmworker harvests oranges in the San Joaquin Valley, which has some of the unhealthiest air quality in the country. Photo: Marcio Jose Sanchez/AP
At the core of community-engaged research is a simple idea: The people being studied should have a say in the science being conducted on their behalf. And while this approach emerged as a correction to ethically dubious research conducted in historically marginalized communities, studies have shown that it can also get better results.
Patel had seen the benefits with her own eyes. As a graduate student, she’d traveled to a remote area of Honduras, intent on educating the locals about nutrition and obesity. When they told her they were more concerned about high death rates from cervical cancer, she changed course, applying her research skills to co-designing a program with the community that would teach them to perform cervical exams. More than a decade later, death rates have plummeted—and the locals now train visiting medical students in rural medicine.
“What we learn when we engage with people on the ground is how to ask better questions—questions that matter.”Gabrielle Wong-Parodi, Assistant Professor in the Stanford Doerr School of Sustainability
Listen to learn
After that conversation with her patient at the Veterans Affairs Palo Alto Health Care System, Patel began interviewing other community members in the San Joaquin Valley. Again and again she heard that same thing: They wanted to improve the air. Specifically, they wanted to clear up the air that the children were breathing. Even locals without kids of their own said it was their priority.
Patel decided that she needed help from someone who studied air quality and climate change—someone who also understood community-engaged research. She found Gabrielle Wong-Parodi, an interdisciplinary social scientist and assistant professor at the Stanford Doerr School of Sustainability.
Wong-Parodi studies decisions—specifically, how communities confronted with the first and worst impacts of climate change take steps to protect themselves.
In 2021, Wong-Parodi and some fellow researchers secured funding from the National Science Foundation, the Environmental Protection Agency, and Stanford Impact Labs for a longitudinal study called “Our Communities, Our Bay.” Its purpose: to track the effectiveness of assorted low-cost adaptations designed to reduce public health risks from climate change-related hazards, such as extreme heat and wildfire smoke.
Wong-Parodi learned from the study that frontline communities were desperately trying to shield themselves however they could. One interviewee wore a respirator all the time, even while asleep, to the point where it worsened her asthma.
At first, Wong-Parodi and her collaborators thought that weatherproofing was the right approach. If they sealed up the holes and cracks in windows, doors, and walls, and added insulation, they would be able to improve residents’ comfort, and to reduce smoke and heat infiltration during fire season; this would, in turn, generate data that compared indoor air quality and the health of residents before and after the weatherization.
But in hearing from the community, a more complicated story emerged. Residents couldn’t make changes to their homes without worrying that they’d run afoul of the landlord.
So the study pivoted. They set up low-cost air sensors in Bay Area homes—that way, residents could see for themselves how air quality is changing, and adapt in response. And once the sensors gathered several years’ worth of data, Wong-Parodi and her collaborators could begin assessing it for patterns.
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After listening to agriculture workers in California’s San Joaquin Valley, researchers shifted their focus from cancer detection and treatment to addressing the unhealthy air. Photo: Michael Macor/San Francisco Chronicle
Community partners
Wong-Parodi joined Patel on the San Joaquin project in 2022. So did Mathew Kiang, an assistant professor of epidemiology and population health. Together, they began envisioning what truly collaborative research would look like in this community.
Patel has already begun meeting with community members and representatives from public health organizations based in the San Joaquin Valley and local policymakers, to work on the design of the study. Many residents have asked to have air filters installed in elementary school classrooms—a move that would generate data for the research, while also making an immediate improvement for the children. Other residents who work in agriculture have told Patel they’re tired of being told to wear N95s on bad air quality days—mandatory or not, no one was going to wear a heavy mask while working in 105-degree heat.
But they are interested in having access to enclosed spaces with filtered air, where they could go when air quality gets especially bad. And they’re interested in keeping tabs on that ban of agricultural burning, due to take effect on January 1, 2025. Will it actually improve air quality? Or will farms take advantage of a loophole that allows them to still set fires if they have “disease and pest concerns?”
It can be years between the start of a community-based study and its results. That’s dramatically different from standard practice—working with data that someone else has already collected (usually about a year from idea to publication) or collecting data without asking participants for input (maybe a year to develop a study and collect the data, and another year to publish a paper about it). The eternally looming need to publish also makes community-based research less common; waiting so long for data can have real career implications for scientists.
Community-engaged research isn’t just motivated by ethics—studies show it often gets better results.
But the potential for this approach is immense. If San Joaquin Valley residents are able to adapt to wildfire smoke and protect themselves, that research will go on to help others. It could also reverberate across the lives of the study’s participants—children focusing better in school because they aren’t struggling to breathe, and adults better able to stay healthy and active without being waylaid by chronic disease.
This research could potentially result in changes to occupational safety standards for agricultural workers or firefighters. It could alter management of wildlands near those agricultural areas. Kiang, the epidemiologist working with Patel and Wong-Parodi, could conceivably find a correlation between the presence of air filters in elementary schools and better test scores, or fewer hospitalizations due to asthma attacks in pediatric wards. Community members could use such data as leverage for policy changes, like installing air filters in all schools.
“Communities know the problems and the solutions,” Patel says. “Collaborating with community partners on projects such as these is critical to moving the needle in a sustainable way with large societal problems.”
What’s more, it could spur new research that hasn’t even been considered yet within Stanford.
“What we learn when we engage with people on the ground is how to ask better questions—questions that matter,” says Wong-Parodi.
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