“The NIEHS Office of Data Science is dedicated to realizing the full potential of environmental health research both at NIEHS and the broader environmental health community,” Shatz said. (Photo courtesy of Michael Garske)

The annual March 14 Pi Day observance at NIEHS, sponsored by the NIEHS Office of Data Science (ODS), featured a seminar titled “Citizen Science and the Community Engaged Research Spectrum: Lessons Learned and Future Opportunities.”

Attendees and organizers shared pies, along with ideas about ways to enhance citizen involvement in scientific research.

Co-presenters Liam O’Fallon, from the NIEHS Partnerships for Environmental Public Health program, and Gretchen Gehrke, Ph.D., from the nonprofit Public Lab, were introduced by ODS contractor Maria Shatz, Ph.D.

O’Fallon and Gehrke shared a comprehensive view of citizen science. The two first met at the 2016 Environmental Health Science FEST.

Community-engaged research — a spectrum

O’Fallon started by noting that community-engaged research is a spectrum of community participation. He distinguished between studies initiated by scientists and studies led by community residents, emphasizing the importance of motivation.

“NIEHS strives to facilitate bidirectional communication and build science capacity with multiple partners,” said O’Fallon. (Photo courtesy of Michael Garske)

Academic scientists often conduct research — even when using community-engaged research approaches — to test a hypothesis, with the goal of a publication to generate funds and interest to continue the studies.

By contrast, citizen science is driven by a question or concern about an observed disease or exposure in the community. O’Fallon said that community residents are motivated to engage in research to better understand issues and translate their findings into action that addresses their concerns.

Gehrke separated the notion of community-based science into distinct categories.

• Crowdsourcing involves the public in collecting data that will be analyzed by scientists.
• In community-based participatory science, local residents participate in research design, and academic collaborators report findings back to them.
• Civic science makes use of low-cost data collection methods so citizens can help collect data for scientific analysis.
• In citizen science, citizens are enabled, through training and involvement, to propose a scientific project and receive supporting funds to conduct their own research. Members of these groups are eager to collaborate with academic partners to contribute to science in their communities.

Gehrke pointed to the Citizen Science Association as an overarching group for the diverse individuals and organizations involved in these activities. The association’s 2019 biannual conference will be held in Raleigh, North Carolina, not far from NIEHS.

Opportunities for collaboration, challenges faced

Gehrke is the data and advocacy steward with Public Lab, whose work closely aligns with ODS interests, according to Shatz. (Photo courtesy of Michael Garske)

Audience members and Gehrke discussed several potential collaborations with community-based science groups.

• Integrating citizen data with toxicology databases.
• Projects that could look at acute health effects rather than chronic exposures.
• Integrating exposome science with community-based projects. The exposome refers to all of the exposures a person receives over the course of a lifetime.

“Citizen scientists struggle with the same problems as the professional researchers,” said Shatz. “[These include] collecting big data volumes, housing the data, protecting sensitive information, how to share, reuse, and repurpose the data, and how to ensure different data sets use common terms, units, and compatible file formats.”

The event provided an opportunity for NIEHS to share best practices in data science and knowledge management. NIEHS has been involved in community-based research since 1994.

“Regardless of what you call it,” said O’Fallon, “when you engage respectfully and authentically with community residents, everyone benefits. Community-engaged research approaches help advance our scientific understanding, ensure research leads to meaningful action, and inspire the next generation of environmental health scientists.”

(Simone Otto, Ph.D., is an Intramural Training Research Award fellow in the NIEHS Ion Channel Physiology Group.)