Developing Best Practices in Sharing Study Findings with Participants
Highlights
PHI’s Child Health and Development Studies is not only advancing groundbreaking research on how environment influences health, but they’re also developing and testing best practices for reporting this information back to study participants.
300 women tested for chemicals like pesticides and flame retardants
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Focus Areas
Chronic Disease Prevention, Environmental Health, Women, Youth & Children -
Expertise
Research – Quantitative -
Experts
Barbara Cohn, PhD, MPH, AB
PHI’s Child Health and Development Studies is not only advancing groundbreaking research on how environment influences health, but they’re also developing and testing best practices for reporting this information back to study participants.
In one project, CHDS tested the blood levels of 150 African-American and 150 non-African-American women for chemicals like pesticides and flame retardants. The findings—for individuals and for the group as a whole—were shared with participants, allowing researchers to assess best practices and impact of personal report-back.
The project is a novel collaboration between researchers and cohort members who function as the community partner via their membership in a Participant Advisory Council (PAC).
In 2021, CHDS, the CHDS PAC and the Silent Spring Foundation published results of their study in Environmental Health Perspectives (EHP) comparing the experiences of participants who received personal reports showing them the levels of chemicals found in their blood samples versus women who received only study-wide (aggregate) results.
Because the study group included 50% African American women, the research also explored the history of structural racism and research exploitation that differentially affects the experience of Black people as research participants. In previous research, ethical considerations around disclosure have often been superseded by researchers’ own decisions about how data ‘should’ be used. Further, there is a long history of researchers using participants’ biological samples, sometimes without their knowledge or consent, without including participants in study results or applications and often with egregious and specific harms to BIPOC, disabled, mentally ill and other communities.
The new EHP study underscores the importance of sharing personal data to build trust with participants, which can also empower them to make different personal choices and to advocate for stronger community protections—particularly among those who may have experienced harm from or had negative experiences with how data has been used within the medical and research communities.
The study found that:
- Participants who received personal results compared to those receiving study-wide (aggregated) results only were more motivated to access online information about chemical sources and potential health effects
- While report-back was associated with a small increase in worry, researchers suggested that it could motivate appropriate action.
- Personal report-back increased engagement with exposure reports among Black participants.
The findings will be used to help shape biomonitoring report-back approaches in future research nationally and around the world.
Show Your Work: Increasing Engagement through Personalized Participant Report-Back
An Environmental Health Perspectives article explores this study's results and impacts for the field. “Feelings of worry increased a small but significant amount between the pre- and post-interviews, and the increase was greater for participants who received personal results,” says Julia Brody, executive director and senior scientist at the Silent Spring Institute and the paper’s lead author. “These results make sense to me because people are learning about chemical contamination that is directly relevant to them. From a public health standpoint, the realization that ‘pollution is personal’ can be a plus for motivating people to take action to reduce harmful exposures.”
PHI’s Science for Toxic Exposure Prevention program is also developing and testing best practices for reporting study results back to participants. See their work on “Wildfires and Best Practices for Sharing Household Water Contamination Test Results.“
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