The key to successful research? Let the community lead

It’s been 20 years since Barbara Allen first addressed Louisiana’s Cancer Alley.

At the time, the Louisiana native and professor in Virginia Tech’s Department of Science, Technology, and Society wrote a book on the topic called “Uneasy Alchemy,” the title referring to both the tensions and promises of experts working with local residents to further environmental justice.

Cancer Alley is an 85-mile stretch of land along the Mississippi River between Baton Rouge and New Orleans with more than 200 petrochemical plants and refineries, which are facilities that process chemicals derived from petroleum. There, cancer and respiratory illness rates are said to be among the highest in the nation, although state officials say their data doesn't support such a claim.

In October 2022, the Environmental Protection Agency released the results of a study that found "significant evidence” that the state’s actions and inactions may have resulted in adverse health effects among the region’s Black community, Business Insider reports. However, the investigation was dropped over the summer after Louisiana’s state attorney filed a lawsuit. 

Fast forward to now. Allen said she is still discouraged by the area's progress and the lack of official analysis of cancer rates among individuals living near petrochemical facilities and is making plans to return to Louisiana. But this time, she will have a $600,000 National Science Foundation grant in tow – along with years of community research experience.

Allen’s team will put the community at the center of the research by offering workshops to residents. Team members will produce scientific reports that can be used to support their health claims and make change happen. Residents will work with her team to analyze and interpret data and share their own insights and experiences.

Ultimately, the team will create an online manual that will enable other regions to replicate the process of producing data analyses from government sources. Team members hope their work will enhance researcher, community, and institutional capacity to continue this kind of collaborative science work relating to justice and equity, Allen said.

A full-circle moment

Receiving the award was a full-circle moment for Allen. She will have two years to complete her research and a home base at Dillard University, a historically Black university in New Orleans.

Her collaborators include Michelle Smith, director of Dillard University’s Minority Health and Health Equity Research Center, and Alison Cohen, an epidemiologist at the University of California, San Francisco. The group also will train undergraduates to be researchers in their communities and will examine health data from government agencies, such as Medicaid and cancer registries, to explore resident health patterns and community well-being.

Allen said the key to a successful project involves earning the trust of the community and putting people's needs first. She said that all too often, researchers storm into new places to collect data, produce a report, and leave without involving the community in any substantive and transformative way in the process.

A pointer that Allen emphasizes is “data doesn’t speak. People do.”

“You can collect all of the data that you want,” she said. “It can be good and it could be nonbiased. But if it’s not community science and it doesn’t come from their questions — better yet how they speak about it and in their voice — if they didn’t help make and guide it, then it’s not going to be used in their advocacy for change.”

Advocate in France

The project is an undertaking Allen is well prepared for, given she recently completed a similar, years-long study in France.

The study, based in Marseille, documented the health issues of residents living in two towns located in industrial zones with more than 400 petrochemical facilities.

The study was designed to answer residents’ questions about the health effects of living in industrial zones.

Allen said she became aware of the issue in 2014 while working on a different National Science Foundation project addressing the ways in which residents participate, or not, in the environmental science used for regulation.

“I talked to the local pediatrician who was just beside herself with the kind of illnesses she was seeing in children,” Allen said, noting many reported chronic cases of nosebleeds, itchy eyes, and asthma.

Other doctors were concerned about environmentally triggered Type 1 and Type 2 diabetes and cancers, among other diseases.

Soon, she realized there was a strong mistrust among residents in governmental-led health studies, as many felt that their worries and suspicions were often dismissed or swept under the rug.

One of the towns — the seaside Fos-sur-Mer — is home to numerous petrochemical industries and to a large number of people reporting mysterious illnesses.

Government-sponsored health studies had concluded that environmental factors were not to blame. 

By conducting door-to-door health surveys and holding collaborative workshops with residents and other stakeholders to discuss their findings, the team provided tangible evidence that empowered individuals to advocate for health interventions and regulatory change.

The French Agency for Food, Environmental and Occupational Health provided funding for the project, which drew regional, national, and international media coverage, and piqued the interest of other French communities that wished to embark on similar studies.

Ultimately, team members discovered that residents had a strong interest in research as a means to answer questions about health. They believed that community-based research can create social and policy changes.

Let people lead

Allen’s time in France taught her the importance of letting the community lead – a lesson she will take with her to Louisiana.

“I learned that staying behind the scenes is important if you want participatory projects to work,” Allen said. “You need to turn it over to the people early and step away from the press camera, directing journalists to speak to the residents instead. I learned it in France, in large part because my language skills were limited so that I had to do that. But it turned out to be a brilliant decision, because the people take it and run with it. So, I’m planning to work the same way with communities in Louisiana, such that the community will vocalize their health issues backed by the science they helped produce early on. "

Allen said the methodology of participatory health science has become popular in France.

"It's really seated itself within the French health service so that they now do this, particularly in areas where citizens are really not trusting of the state,” she said. “I’ve been amazed at the impact it’s had. People will never be the same. They’re not going to be docile subjects anymore.”

She said her hope for Louisiana is that the project will “be even better.”

Allen said team members will not conduct door-to-door surveys in Louisiana but instead use state data when they head into Cancer Alley and beyond. Allen said that groups from Texas, where the chemical industry is “growing by leaps and bounds,” also have expressed interest in similar studies. Allen said the work is meant to evoke policy changes.

“The state of Louisiana is heavily aligned with the oil industry and their lobbyists,” she said.

Using state data, Allen said, will make it harder for naysayers to argue against the results. She said she expects the team to capture a huge snapshot of health issues including among the region’s pediatric population.

Saul Halfon, associate professor and the chair of Virginia Tech’s Department of Science, Technology, and Society, said Allen’s work bridges the chasm between strong, empirical social science and the world of public science, supporting the needs of under-resourced and minority communities.

“She has consistently worked with these communities in their struggle against toxic chemicals and the institutions that produce and allow those chemicals to accumulate,” he said. “This kind of social-justice oriented, engaged scholarship serves as an ideal model for the ways that a land-grant university like Virginia Tech can make a difference in everyday lives.”