Reporting Personal Levels of Environmental Chemicals: Impact

Institution: Public Health Institute
Investigator(s): Barbara Cohn, Ph.D., MPH, MCP - Laurie Havas,  -
Award Cycle: 2013 (Cycle 19) Grant #: 19BB-2800 Award: $756,093
Award Type: CRC Full Research Award
Research Priorities
Etiology and Prevention>Etiology: the role of environment and lifestyle

Initial Award Abstract (2013)

Introduction. Calls to report personal environmental data to research participants (personal report-back) have been raised by environmental justice and breast cancer advocates. Consensus statements by The National Academy of Sciences, Centers for Disease Control and recently, the Interagency Breast Cancer and the Environment Coordinating Committee (IBCERCC) call for personal report-back. These agencies identify the need to develop and test best practices for personal report-back. Our proposed project addresses this need. Our proposal also addresses another critical need identified by IBCERCC: increase the capacity for breast cancer research where exposures are measured during vulnerable times in life, in the womb, during puberty and during pregnancy. This proposal addresses this priority by funding personal report-back, and the study of its impact in The Child Health and Development Studies (CHDS), one of the only studies that can measure exposures in the womb and relate them to breast cancer. CHDS is a 50-year study (cohort) of more than 15,000 families beginning with blood specimens obtained from mothers during pregnancies between 1959 and 1967. The CHDS is now conducting the first womb to breast cancer study and collecting data for future studies on granddaughters and great granddaughters. 98% of participants said they want to receive personal results, but there are no funds to provide them or measure the impact of receiving them. This proposal addresses this lack.

Hypotheses. We hypothesize that personal report-back will increase participant’s commitment to research, knowledge about environmental chemicals, and motivate personal and community-level action to reduce exposures; and that personal report-back will motivate women who are often asked for health advice to discuss environmental chemical exposures with their broad networks, spreading the message.

Methods. We will report personal levels of environmental chemicals to 300 CHDS participants who donated blood samples in 2012-2013 in the Three Generations Breast Cancer Study, funded by the California Breast Cancer Research Program. Assays for persistent chemicals, such as the pesticide DDT, and for modern chemicals, such as flame retardants, will be completed by April, 2014 for 150 African-American women and 150 non-African-American women, who are eligible for the proposed study. We will randomly choose half of the participants to receive personal as well as average study results, while the other half will, at first, receive only average results. We will conduct a telephone interview before and after participants receive results to determine whether participants who receive personal results are more likely to seek and gain knowledge and to try to reduce personal and community exposure. The women who initially did not receive their personal results will get them after their second interview. Personal report-back and information about sources of exposure and ways to reduce it will be provided through a secure web-based tool already pilot tested by our Co-investigator, Dr. Julia Brody, Silent Spring Institute (SSI).

Innovation. This will the first study to: 1) Include participants in a cohort study as Community Partners; 2) Learn whether personal report-back motivates participants to join future studies; 3) Examine the effectiveness of web-based personal report-back for motivating participants to learn about and reduce exposures through personal and community action; 4) Learn whether personal report-back motivates women with many social contacts to spread information about environmental chemicals and breast cancer, thus reaching more women efficiently.

Community Involvement. Our Community Partner is the CHDS Participant Advisory Council who have been working with CHDS and SSI over 24 months to review and design methods for personal-report back and who have also been trained in Community Based Participatory Research (CBPR) during that same time by Dr. Marj Plumb. This is the first time that members of a cohort have been engaged in CBPR.

Use of Study Results and Future Plans. Strengthening commitment of CHDS participants to research, via CBPR and personal report-back, will enhance the potential of the CHDS to continue to learn how exposure to environmental chemicals during windows of vulnerability for the breast may impact breast cancer in multiple generations. We expect that this research can lead to prevention strategies that reduce the human and economic burden of breast cancer soon, without waiting decades. The results will be relevant to other studies being planned or in progress. Since CHDS participants are a varied population with substantial African-American representation, information on the impact of personal report-back will be applicable to the community at-large and to African-Americans in particular, who are known to have higher exposures to many environmental chemicals.

Progress Report 1 (2014)

Our project will develop and test best practices for report-back of environmental chemicals and study the impact of providing these results to about 300 women in the Child Health and Development Studies (CHDS). This project is a novel collaboration between CHDS researchers and cohort members who function as the community partner via their membership in a Participant Advisory Council (PAC). This is the first time a cohort study has engaged its members as research partners. A PAC member serves as the Co-PI on this project.

Blood levels of chemicals like pesticides and flame retardants were tested in early 2014 for 150 African American and 150 non-African American women who gave a blood sample and permission to have it analyzed. Participants were divided randomly into two study groups. All 300 women will be invited to a phone interview. After the first interview, half will receive both personal results and results for all women combined (group results). The other half will receive only group results. Everyone will be invited to a second interview one month later. After the second interview, women who received only group results will receive their personal results. The Community Partners (PAC) and CHDS collaborated to draft the recruitment scripts and study documents which will be presented to the IRB for final approval. The interview questions were piloted in May 2014, after obtaining IRB approval, by PAC members, their friends, and friends of the CHDS. The survey questions were revised based on the pilot results. Participants will get their results on a secure website currently being designed by Co-investigator Dr. Brody and her team of computer scientists who specialize in human-computer interaction and responsive designs. The PAC and CHDS have worked with Dr. Brody at two in-person meetings between November 2013 and June 2014 to make the website clear and user-friendly.

Monthly conference calls have been implemented to keep the project moving forward and make sure everyone is able to provide input. There is a community partner call; a science call; and a team call attended by the community partners and scientists. The notes from each of these meetings are distributed to the entire team.

Our first accomplishment is the successful partnership of the PAC, and CHDS scientists. By study completion we hope to A) find out if personal report-back encourages people to participate in research; B) see if providing information on a website inspires people to learn about and reduce their chemical exposures; C) find out whether people share their knowledge of environmental chemicals and health with others.

In collaboration, PAC members and researchers plan to obtain final IRB approval in the Fall of 2014,start recruiting participants in early 2014, train the interviewers in late 2014, analyze the study results starting in mid-2015 and disseminate the findings in the Spring of 2016. This study is on track to meet timeline goals.

Progress Report 2 (2015)

Our project will develop and test best practices for report-back of environmental chemicals and study the impact of providing these results to about 300 2nd generation women in the Child Health and Development Studies (CHDS).

We began subject recrutiment in July 2015. The Community Partners (PAC) and CHDS collaborated to draft the recruitment scripts and study documents which have been approved by PHI IRB. The secure website design, where participants obtain their results, has been finalized by Co-investigator Dr. Brody and her team. The PAC and CHDS have continued to work with Dr. Brody through this grant year to make the website clear and user-friendly. The interview instruments for the data collection required to evaluate the impact of the report-back have been completed. The first interview of the data collection phase is in progress and participant respsonse has been strong and positive. Initial analytics monitoring website engagement by participants is showing promise and interest. The CHDS is carefully coordinating the logistics of the data collection to ensure that the study remains on track. This has required the implementation of finely tuned study protocols that manage the multiple complexities of a design with two interviews for two different participants groups, test and control, conducted at two sites, CHDS and Silent Spring Institute.

One barrier to getting in the field was the final design of the secure report-back web site. This site needed to be easily understood by the partiicpants before going live. Decisions about the best way to inform pariticpants about how their levels compare within the CHDS and with women in other studies required detailed and iterative discussion and supplemental data analysis. Decisions about selecting study results that were specific to the CHDS to enhance pariticpant interest and relevance also required time and additional data analysis. For these decisions the scientistis needed to examine trends in chemical levels across mother and daughter generations and differences by race. Data analysis was also performed to develop criteria for identifying participants with unusually high levels of chemicals. These people will be given the option to talk to a toxicologist at Silent Spring Insitute to dicsuss their results directly.

During this report period we have succesfully continued twice monthly conference calls with the community partner and scientistis. In addition to these monthly calls we have had quarterly PAC meetings with a select group of our cohort members. At these PAC meeting we have revised and improved every aspect of this project including the recuritment materials, interview process, and report-back tool. The partnership of the PAC, CHDS, and Silent Spring Insitiute has been a successful one. The study has launched the first interview of the data collection phase with strong participant response.

We plan to continue to recruit participants to the pre and post-test interviews through the end of 2015, start analyzing the study results in early 2016 and disseminate the findings in the Summer of 2016. Despite a delay in starting the data collection this study is on track to meet timeline goals. By study completion we still hope to 1) find out if personal report-back encourages people to participate in research; 2) examine whether providing information on a website inspires people to learn about and reduce their chemical exposures; 3) determine if people share their knowledge of environmental chemicals and health with others.

Pesticide Used Decades Ago May Raise Breast Cancer Risk: Study

DERBI: A Digital Method to Help Researchers Offer “Right-to-Know” Personal Exposure Results

Conference Abstract (2016)

MyCHDSReport: An Online Portal for Reporting Chemical Exposures to Study Participants

Authors: Julia Brody1, Laurie Havas2, Katie Boronow1, Marj Plumb3, Ruthann Rudel1, Herb Susmann1 and Barbara Cohn2
1Silent Spring Institute, Newton, MA
2Child Health and Development Studies, Public Health Institute, Berkeley, CA
3Plumbline Consulting

In 1959–1967, researchers asked women giving birth in Oakland, CA, to enroll in a long-term study of the influence of early life on children’s development. Fifty years later, the Child Health and Development Studies (CHDS)—whose participants now include the original mothers, their children, and grandchildren—is a unique study that relates chemical exposures in the womb to breast cancer in multiple generations. Participating families made major contributions to science by donating biological samples for analysis and volunteering their time to answer questions about their health and lifestyle. Some took leadership roles by joining the Participant Advisory Council (PAC). To further engage with cohort members, CHDS researchers and the PAC teamed with Silent Spring Institute to test a web-based tool to report individual results to participants. Researchers interviewed participants about their experiences receiving results.

Previous studies show that participants who have the option to receive individual results feel respected by researchers, choose to review their results, and do not experience excessive worry. Individual report-back enhances environmental health literacy, improves participant retention, and motivates action. Reports that include only the study-wide results replicate important aspects of the individual report-back experience, such as follow-up contact from researchers and increased access to environmental health knowledge. However, participants may be less engaged by study-wide results than by their own findings. We hypothesized that personalized reports will be more effective than study-wide results alone for educating participants and promoting behavior change.

We adapted the digital exposure report-back interface (DERBI) to create an online portal, called MyCHDSReport, to return results to 295 CHDS participants whose blood was tested for 42 environmental contaminants, including banned pesticides, PCBs, flame retardants, and highly fluorinated chemicals. To investigate the effects of reporting personal results, half the women received their personal results highlighted in graphs of study-wide exposure results, and half received only study-wide results at first. All reports included contextual information about the chemicals (including sources of exposure, health effects, and tips for reducing exposure) and key scientific findings from the study. Participants were interviewed before and after receiving their report and responded to an online survey while viewing their report. We collected web analytic data about how participants navigated the report. The digital report and study design were developed in collaboration with the PAC, and a PAC member served as a co-PI of the study.

Participants generally responded positively to the report. Many survey responses expressed appreciation for the information provided. Participants who received individual reports sometimes felt surprised or alarm at the number of chemicals found in their body, but planned to take action to reduce exposure. In contrast, participants who received only study-wide results expressed anxiety over not knowing their individual results. Web analytics show that participants who received study-wide results spent less time on average viewing their report. Interview data are still being analyzed. Please visit our poster, which will illustrate the design of MyCHDSReport, present preliminary analytic data, and showcase the experience of a PAC member who is also a co-PI and study participant.