Empowering Communities through Citizen Science
Barbara Allen, professor of science, technology and society in the College of Liberal Arts and Human Sciences, has always cared deeply about the impact of the environment on people and communities. Her work, which spans both the United States and Europe, examines the intersection between environmental justice, citizen science and policy and regulation.
Allen’s most recent work, focused primarily in France, has been the impetus to empower local citizens in two French communities to advocate for critical policy change and has led to the training of key public health officials and scholars in the French Health Service.
This research grew out of a National Science Foundation (NSF) grant in which Allen was conducting a comparative analysis of the ways citizens shape environmental policy in different countries. For this project, she interviewed French citizens and agency officials in a large industrial area of France, called Etang de Berre, that has been heavily impacted by pollution. Many of the French participants repeatedly voiced health concerns that they believed were largely due to living near the industrial zone.
Even though the French Health Service had conducted numerous health studies in the region, the results were either inconclusive or showed no harmful effects. “This seemed counterintuitive to what the residents and physicians in the communities were seeing and experiencing,” Allen explained.
When Allen mentioned to citizens, that in situations like this one in the U.S., local citizens with the help of public health experts often use a community-based participatory research approach to investigate concerns, they were enthusiastic to give it a try.
Community-based participatory research (CBPR) engages community members in all phases of the research process from identifying issues of concern, to developing research questions and instruments to data analysis and recommendations for change. It uses rigorous, evidence-based research methods to help residents identify problems and solutions within their own communities.
“Although I had studied environmental justice movements and how citizens interact with science in environmentally devastated areas, I had always done so from ‘above,” as a sociologist. I knew you could conduct research in communities, but I had never done it before,” said Allen.
She sought the advice of some experts in the U.S. and then secured about $250,000 in funding from ANSES, a new French agency for environmental and occupational health that was focused on increasing transparency and citizen involvement in environmental issues.
She hired two local medical anthropologists one of whom was from the region. Together, they collaborated with two communities, Fos-sur-Mer and Port-Saint-Louis-du-Rhône, to develop and implement a 42-page survey to assess the residents’ health.
Given their CBPR approach, they integrated validated survey questions and measures, used to increase the survey’s credibility, with resident input on the health topics of greatest concern.
“We interviewed more resident informants and local doctors until we were sure we had a list of the relevant health concerns. We then designed a survey tool to address these concerns that mattered to the public.”
They also held public meetings and put ads in local newspapers and on listservs to get the word out about the study.
Over the next six months, they went door-to-door and interviewed citizens in their homes. Because the research team involved the community in their survey design and made them aware of the process throughout, their efforts resulted in an astounding 45% response rate to the survey.
“This response represented over 800 households and nearly 10% of the population,” said Allen. She believes this may be the largest CBPR study ever conducted. Although this method has been used in various forms since the 1940s in the U.S., it is not commonly used in Europe.
“Preliminary results from the survey revealed increased prevalence when compared to the French population for a number of health conditions such as asthma, cancer, diabetes, and autoimmune diseases,” Allen noted.
But the survey was only the first phase of the study. What followed was a process of engaging the community with the data to get their help in further analyzing it and providing context for the results. Allen’s team conducted over 30 focus groups with the community members, sharing the data and listening to their stories, reactions and questions.
“This is really the most innovative and exciting thing about the study. This collaborative analysis was a unique and valuable way to gain their trust and input about the study’s findings. Integrating their lived experiences with the survey data made the statistics more understandable and real,” Allen explained. “By the end, the citizens ‘owned’ the data and could speak about it authoritatively.”
Allen believes this validation of study findings through involvement of the citizens is one of the key elements of effective citizen science.
“We did not want to just produce numbers. A mistake that is commonly made with citizen science is to produce data and then just hand it to people. The data is just the tip of the iceberg. As community members make sense of it, they suggest new avenues of knowledge and the process makes the data more robust.”
Allen’s study helped empower the residents in these two French communities to take further action, with focus group members coming up with over 40 recommendations for ways to improve their local environment and health.
For example, according to Allen, “they have challenged industry re-permitting and expansion and have advocated for including cumulative environmental exposures in these decisions.”
The citizens have also lobbied for expanded health clinics and access to medical specialists as well as comprehensive patient exams given the cluster of symptoms and associated illnesses found through the survey. In addition to health-related actions, they have advocated for policy changes related to air quality.
Allen’s study received widespread media coverage in France – more than 160 news articles and radio and TV stories – leading to other cities and even scholars in other countries approaching her to conduct similar studies. Given this great interest in her work, she was able to secure another ANSES grant to lead a 4-day workshop in Marseille, France in the summer of 2018. She trained 25 public health officials in the community-based participatory research approach, with plans for her and her team to train additional public health scholars at the Sorbonne in Paris in November 2019. The environmental epidemiology branch of the French Health Service has also contacted her and they are tentatively developing plans for a similar training for their staff. Allen was also recently invited as visiting faculty to the University of Padova Medical School’s innovative program on “Epidemiology and Local Knowledge” where she taught a day-long module to medical doctors and public health officials.
“This project may very well change the way the French Health Service conducts health studies, especially in contested regions where citizen trust in state data is minimal,” Allen said.
She also hopes to promote her experience in using human epidemiology data as an effective way to conduct citizen science. Since epidemiological data is often considered the gold standard in guiding environmental health policy, she believes being able to produce epidemiological data with citizen input is the best way to have an impact and guide actual policy change.
Closer to home, Allen now regularly teaches a graduate course called Science, Technology and Social Justice so that students can learn about these research methods and her experiences.
She noted, “Support from ISCE has provided me the time to write the grants I submitted to and ultimately received from ANSES. It may take time for projects like this to evolve, but in the end, it can be very fruitful.”