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Your Environment. Your Health.

Sharing Research Results to Empower Individuals and Communities

Julia Brody, Ph.D.

November 19, 2019

Julia Brody, Ph.D.

Brody focuses on reporting back results to study participants to inform them of their chemical exposures.
(Photo courtesy of Silent Spring Institute)

It was over 20 years ago when NIEHS grantee Julia Brody, Ph.D., first started receiving phone calls from study participants asking for their results. Ever since, she has dedicated her career to results report-back, a practice that ensures individuals and communities that are part of environmental health studies have access to their results and information on what they mean for their health.

Brody is executive director and senior scientist at Silent Spring Institute, a non-profit research group focused on uncovering environmental risk factors related to breast cancer. She has been a major driver in advancing the field of results report-back and establishing it as an important step in environmental health studies that collect biological or environmental samples from people and their homes.

A Foundation of Ethics

Brody and her colleagues first began thinking about report-back while working on the Household Exposure Study — an effort to identify environmental factors influencing the high rates of breast cancer observed on Cape Cod, Massachusetts. The research team collected air and dust samples from 120 homes on Cape Cod, as well as urine samples from women living in the homes, and tested them for 89 endocrine disrupting chemicals (EDCs).

Brody and her team felt an ethical obligation to return results to the women who donated time and samples to the study. “When you engage the community in research, reporting back becomes an ethical issue. Report-back supports a focus on co-ownership of data, co-learning, and capacity building,” she said. “Participants who learn their results become empowered to take action to protect their health. If you don’t tell people their results, they can’t learn from or act on them.”

Benefits Go Both Ways

As Brody began studying the impact of results report-back she noticed that both researchers and study participants were benefiting from the process. For example, it was contributing to study participants’ ability to draw connections between what’s in their environment and how it may be affecting their health, adding to environmental health literacy.

In interviews with researchers, Brody’s team learned that those who have done results report-back found that it contributed to the sustainability of their project by encouraging participants to stay engaged throughout the entire span of the study. It can also lead to new discoveries by getting researchers to focus on individuals with very high exposure levels.

For example, in the Household Exposure Study, Brody’s colleague and Silent Spring Institute researcher Ruthann Rudel identified two participants with very high levels of polychlorinated biphenyls (PCBs) in their house dust. Knowing that she would be talking to those participants motivated her to re-test the dust samples, collect blood samples, inspect their homes, and interview the residents in search of an explanation. By talking to these individuals, she discovered that a floor finish was the likely source of exposure and was also a common and overlooked source of PCB exposure in older homes in general.

A New Tool for Returning Results

Example DERBI user report

Example DERBI user report. Participants first see their notable exposure results on the summary page (A). Clicking on a chemical name takes them to more information about that chemical group (B). The report includes personalized graphs that show a participant’s chemical level. Digital features like explanatory pop-ups help people interpret the graphs (C). Participants can find tips for reducing their exposure in the “what you can do” section (D). (Image from Boronow et al., 2017)

Although many researchers recognize the benefits of report back, they often lack the time and expertise to return results in a way that is meaningful to participants. To address these barriers, Brody and her team developed a web-based tool that creates customized exposure reports for study participants. Called the Digital Exposure Report-Back Interface (DERBI), the tool generates user-centered reports, which include comparisons with the study group and with national averages. Each report includes the chemical found, health concerns raised by the exposures, actions people can take to protect their health, and an explanation of the study’s overall findings (see image).

The DERBI team adapts user reports to meet the needs of diverse populations. For example, they partnered with NIEHS-funded researchers leading the Puerto Rico Testsite for Exploring Contamination Threats (PROTECT) cohort to select photos and exposure reduction tips relevant to the Puerto Rican population. Reports for PROTECT participants are in Spanish.

NIEHS is now funding Brody and colleagues to improve the smartphone version of DERBI. “Many people in low-income communities primarily access the internet from their smartphone,” explained Brody. “A smartphone version of DERBI will make exposure reports accessible to more people.”

At the same time, the DERBI team is developing a new interface for researchers to guide them through creating personalized reports. “Earlier versions of DERBI required researchers to have advanced computer programming skills to use the tool, which many teams lack. With the new interface, any researcher can use DERBI to visualize personal exposure data and create reports,” said Brody.

Detox Me app home screen

Detox Me app home screen.
(Photo courtesy of Silent Spring Institute)

The smartphone version will be tested in three study populations: the PROTECT cohort in Puerto Rico, the Chemicals in our Bodies cohort in California, and the Breast Cancer and the Environment Research Program cohort in Santiago, Chile.

DERBI also inspired the team to launch Detox Me, a free app that walks users through research-based tips on how to reduce exposure to harmful chemicals found in everyday products. “We realized that people who are not enrolled in a study may still be interested in information on how to reduce their exposure to chemicals found in everyday products and in the home,” said Brody. About 150,000 people have downloaded the app, according to Brody.

Training the Next Generation

Results report-back has come a long way in 20 years, and Brody says it is just one example of how the integration of environmental health science and social science can benefit community-engaged research. “We still have a lot of work to do to help environmental health scientists feel comfortable with incorporating social sciences and the community perspective into their research.”

To bridge this gap, Brody teamed up with Phil Brown, Ph.D., at Northeastern University to establish a training program called Transdisciplinary Training at the Intersection of Environmental Health Science and Social Science. Funded by NIEHS, the program trains the next generation of researchers to build environmental health-social science collaborations that will allow them to effectively respond to complex environmental health challenges.

“If you want environmental health research to benefit public health you need to merge both the community perspective and the science,” said Brody. “We are proud to see our trainees carry this forward in their work and I hope to continue training the next generation of environmental health scientists in community-based research and social science.”

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