Outcomes from Returning Individual versus Only Study-Wide Biomonitoring Results in an Environmental Exposure Study Using the Digital Exposure Report-Back Interface (DERBI)
2021; National Institute of Environmental Health Sciences; Volume: 129; Issue: 11 Linguagem: Inglês
10.1289/ehp9072
ISSN1552-9924
AutoresJulia Green Brody, Piera M. Cirillo, Katherine E. Boronow, Laurie Havas, Marj Plumb, Herbert Susmann, Krzysztof Z. Gajos, Barbara A. Cohn,
Tópico(s)Environmental Justice and Health Disparities
ResumoVol. 129, No. 11 ResearchOpen AccessOutcomes from Returning Individual versus Only Study-Wide Biomonitoring Results in an Environmental Exposure Study Using the Digital Exposure Report-Back Interface (DERBI)is companion ofShow Your Work: Increasing Engagement through Personalized Participant Report-Back Julia Green Brody, Piera M. Cirillo, Katherine E. Boronow, Laurie Havas, Marj Plumb, Herbert P. Susmann, Krzysztof Z. Gajos, and Barbara A. Cohn Julia Green Brody Address correspondence to Julia Green Brody, Silent Spring Institute, 320 Nevada Street, Suite 302, Newton, MA 02461 USA. Email: E-mail Address: [email protected] https://orcid.org/0000-0001-5566-3053 Silent Spring Institute, Newton, Massachusetts, USA , Piera M. Cirillo Public Health Institute, Oakland, California, USA , Katherine E. Boronow Silent Spring Institute, Newton, Massachusetts, USA , Laurie Havas Participant Advisory Council, Child Health and Development Studies, Public Health Institute, Oakland, California, USA , Marj Plumb Plumbline Coaching and Consulting, Omaha, Nebraska, USA , Herbert P. Susmann Department of Biostatistics, School of Public Health and Health Science, University of Massachusetts Amherst, Amherst, Massachusetts, USA , Krzysztof Z. Gajos Computer Science, Harvard John A. Paulson School of Engineering and Applied Sciences, Cambridge, Massachusetts, USA , and Barbara A. Cohn Public Health Institute, Oakland, California, USA Published:12 November 2021CID: 117005https://doi.org/10.1289/EHP9072Cited by:1AboutSectionsPDF Supplemental Materials ToolsDownload CitationsTrack Citations ShareShare onFacebookTwitterLinked InRedditEmail AbstractBackground:Study participants want to receive their biomonitoring results for environmental chemicals, and ethics guidelines encourage reporting back. However, few studies have quantitively assessed participants' responses to individual exposure reports, and digital methods have not been evaluated.Objectives:We isolated effects of receiving personal results vs. only study-wide findings and investigated whether effects differed for Black participants.Methods:We randomly assigned a subset of 295 women from the Child Health and Development Studies, half of whom were Black, to receive a report with personal environmental chemical results or only study-wide (aggregate) findings. Reports included results for 42 chemicals and lipids and were prepared using the Digital Exposure Report-Back Interface (DERBI). Women were interviewed before and after viewing their report. We analyzed differences in website activity, emotional responses, and intentions to participate in future research by report type and race using Wilcoxon rank sum tests, Wilcoxon-Pratt signed ranks tests, and multiple regression.Results:The personal report group spent approximately twice as much time on their reports as the aggregate group before the post-report-back interview. Among personal-report participants (n=93), 84% (78) viewed chemical group information for at least one personal result highlighted on their home page; among aggregate-report participants (n=94), 66% (62) viewed any chemical group page. Both groups reported strong positive feelings (curious, informed, interested, respected) about receiving results before and after report-back and mild negative feelings (helpless, scared, worried). Although most participants remained unworried after report-back, worry increased by a small amount in both groups. Among Black participants, higher post report-back worry was associated with having high levels of chemicals.Conclusions:Participants were motivated by their personal results to access online information about chemical sources and potential health effects. Report-back was associated with a small increase in worry, which could motivate appropriate action. Personal report-back increased engagement with exposure reports among Black participants. https://doi.org/10.1289/EHP9072IntroductionMany environmental health studies assess exposures by testing for chemical levels in biospecimens, including blood, urine, or other tissues, and participants in these studies nearly always want to know their own results. A consensus statement from the National Academy of Sciences Engineering and Medicine recommended the return of individual biomonitoring results (known as report-back) for both ethical and practical reasons (National Academies of Sciences, Engineering and Medicine 2018). Offering results respects the autonomy of participants and, by educating them about environmental chemicals and health, it empowers them to make informed personal choices and contribute to public health decisions at the community and national levels (Brody et al. 2014; National Academies of Sciences, Engineering and Medicine 2018). By showing respect for and engaging with participants, report-back builds trust in the research enterprise and supports recruitment and retention in studies (National Academies of Sciences, Engineering and Medicine 2018; Ohayon et al. 2017).Past research shows that when results are returned with contextual information about chemical sources, health effects, and strategies to reduce exposure, participants in many different communities and across the socioeconomic spectrum appreciate their reports and learn from them (Adams et al. 2011; Altman et al. 2008; Brody et al. 2014; Giannini et al. 2018; Hernick et al. 2011; Perovich et al. 2018; Ramirez-Andreotta et al. 2016a; Tomsho et al. 2019). Participants want their results even when the health implications are uncertain (Adams et al. 2011; Hernick et al. 2011; National Academies of Sciences, Engineering and Medicine 2018), and they generally understand that their chemical levels cannot be linked to specific instances of disease (Altman et al. 2008). After receiving reports, they are motivated to reduce their exposures (Adams et al. 2011; Altman et al. 2008; Brody et al. 2014) and sometimes become active in community-level change (Adams et al. 2011; Brody et al. 2009). In studies using community-engaged methods, report-back supports values of co-ownership and co-learning, and partnering with community members to design study reports improves quality and relevance (Brody et al. 2007; Dunagan et al. 2013).To better understand the distinctive effects of receiving individual results in comparison with nonpersonalized study communications, we undertook the MyCHDSReport Study in a subset of women born 1959–1967 in the second generation of the Child Health and Development Studies (CHDS) who participated in a home visit. We compared outcomes from receiving a report with both personal chemical levels and aggregate study results vs. receiving a report with only the aggregate results. In addition, this sample was designed to comprise approximately half participants who identified themselves as Black/African American. Analyzing effects in this group is an important inquiry because the history of structural racism and research exploitation differentially affects the experience of Black people as research participants (Muhammad et al. 2018). Finally, this study is the first to evaluate personal report-back using an interactive, web-based report created with the Digital Exposure Report-Back Interface (DERBI) (Boronow et al. 2017). Digital reports offer a more flexible experience in comparison with paper reports by making it easier for participants to navigate to the type and amount of information they wish to see by following links to layered information. In addition, by automating report preparation, DERBI makes it practical to personalize reports in large studies in order to highlight and summarize notable findings for each participant.In this overview paper, we describe the community-based participatory research process for report design and analyze participants' engagement with the report, their emotional responses, and their interest in future research participation. We tested whether participants who received personal results had responses that differed from those of participants who received only aggregate results. Recognizing the need to examine racism in research and society (Payne-Sturges et al. 2021), we evaluated whether report-back outcomes differed by race. We prioritized emotional responses, because researchers who are reluctant to report personal results have cited concerns about causing extreme anxiety or panic (Ohayon et al. 2017).MethodsCollaborative FrameworkThis study was a unique collaboration of the CHDS at the Public Health Institute, Silent Spring Institute, in Newton, Massachusetts, and the CHDS Participant Advisory Council (PAC). The CHDS PAC is a racially diverse multigenerational council of approximately 12 cohort members that meets several times a year and that served as the community partner for this study. The CHDS was responsible for recruitment, project implementation, and survey data collection; Silent Spring was responsible for building the MyCHDSReport website and qualitative data collection; and the CHDS PAC assisted in the design of study materials, facilitated recruitment, and participated in data interpretation. We worked together to design research questions, develop content for MyCHDSReport, and analyze data.Study PopulationThe CHDS is a large, multigenerational cohort that enrolled more than 15,000 families residing in the East Bay, California, area from 1959 to 1967 (van den Berg et al. 1988), and it maintains ongoing follow-up. Daughters born into the CHDS were in their 40s and 50s at the time of this study. During the period 2010–2013, the daughters were invited to participate in in-person study visits as part of two adult follow-up studies, the Three Generations Study (3Gs) or the Disparities in Health Study. Among the women who donated blood, a subset of 150 women who had mothers who identified as Black/African American and 150 who did not were randomly selected for assays of environmental chemicals. Participants subsequently provided self-reported race, which we used in our analyses. (For brevity, we refer to participants who chose Black/African American as one of their races as Black participants and to those who chose non-Hispanic White, Hispanic, Asian, or multiple races and did not choose Black/African American as non-Black.) In all but one case, the mother's race aligned with the participant's self-reported race. Report-back of these results became the basis for MyCHDSReport Study. Of the 300 blood sampling participants, 5 were deemed ineligible (4 who indicated at the time of blood draw that they did not wish to receive their assay results and 1 whose assays failed), leaving 295. Eligible participants closely resembled the original CHDS population based on a comparison of maternal characteristics measured at index pregnancy (including age, race/ethnicity, parity, education, health behavior, family income, and infant birth outcomes) (Table S1). The only significant difference between the CHDS as a whole and the study sample was the intentionally greater proportion in the current study of participants whose mothers identified as Black.Blood SamplingTrained examiners conducted in-home visits to collect biological samples, including blood samples collected using a serology protocol adapted from the National Health and Nutrition Examination Survey (NHANES) National Examination Management Services, Inc., standard operating procedures (CDC 2011). Briefly, the examiner put on gloves, prepared and labeled the blood collection equipment and then asked the participant to sit upright, identified an appropriate vein, applied a tourniquet, and cleansed the site with alcohol to perform the venipuncture. Three 10-mL vacutainer tubes, a red top, a green top (with heparin) and a red top, were drawn in succession. Care was taken to explain the procedure to the participant beforehand, to avoid drawing blood from an unsuitable vein, and to dispose of needles and blood supplies in appropriate puncture-resistant sharps containers. Blood samples were placed in a protective biostorage cannister inside a Styrofoam shipper containing polar foam or gel packs for same-day transfer or overnight shipping to the Children's Environmental Health Laboratory at the University of California Berkeley where they were processed. At the laboratory, the liquid portion of both red-top vacutainers was transferred into two 15-mL Falcon tubes of equal volume and centrifuged for 15 min at 4°C at 1,200 g. The plasma layer was transferred into cryovials to form nine aliquots of various volumes for storage at −80°C. Blood clots in each vacutainer were halved and transferred to four cryovials and stored at −80°C. The green-top vacutainer was inverted 10 times to mix the sample. Two 200-uL aliquots of whole blood were withdrawn into cryovials for storage, and then the remaining sample was transferred into a 15-mL Falcon tube and centrifuged for 15 min at 4°C at 1,200 g. From the plasma fraction four aliquots of various volumes were transferred into cryovials for storage at −80°C. The buffy coat was transferred to two cryovials in equal amounts, and the red blood cells were divided into two equal aliquots and transferred into cryovials for storage at −80°C. All cryovials were labeled using cryo-safe labels and immediately transferred to freezers for storage.Serum samples were then shipped on dry ice to the Environmental Chemical Laboratory at the California Department of Toxic Substances Control for chemical assay. Samples were analyzed using the following methods, as summarized here and with details published previously. Two hydroxy-PBDE metabolites were analyzed using a Prominence ultrafast liquid chromatography system (UFLC) (Shimadzu Corporation) coupled to AB Sciex 5500 Qtrap System (AB Sciex LLC), as described in Petropoulou et al. (2014), and 5 additional PBDEs were included in an organochlorine method for 17 PCBs and 7 organochlorine pesticides as described in Whitehead et al. (2015). This method used an Agilent 7890A gas chromatograph coupled to an Agilent 7000 triple quadrupole mass spectrometer (Agilent Technologies). Chromatographic conditions included pulsed splitless injection (20 psi for 1 min) at 250°C, a constant helium carrier gas flow of 1mL/min, and a 30-m DB-5ms column with 0.25-mm diameter and 0.25-μm film thickness (Agilent Technologies). The gas chromatography (GC) oven program was initiated at 90°C, held for 1 min, ramped at 50°C/min to 150°C, held for 1 min, ramped at 8°C/min to 225°C, held for 6.5 min, ramped at 14°C/min to 310°C, and finally held for 6 min. The mass spectrometer was operated in electron impact ionization mode using multiple ion detection, source temperature of 250°C, ionization energy of 70 eV, and mass resolution of 1.2 amu. The transfer line temperature was 280°C. Multiple reaction monitoring was used for quantitation of analytes. Sample concentrations were interpolated from linear external calibration curves with 1/x weighting. MassHunter Quantitation Analysis Workstation (version B.06.00; Agilent Technologies) program was used for sample quantitation. Eleven per- and polyfluoroalkyl substances (PFAS) were analyzed using a Symbiosis Pharma system with Mistral CS Cool (Spark Holland) coupled to an AB Sciex 4,000 Qtrap system (AB Sciex LLC), as described in Wang et al. (2011).For lipids, total cholesterol and triglyceride levels were measured by the Boston Children's Hospital as previously described (Allain et al. 1974), and the Phillips formula was used to calculate total lipid content (Phillips et al. 1989). Total cholesterol, triglycerides, high-density lipoprotein cholesterol (HDL-C), and low-density lipoprotein cholesterol (LDL-C) concentrations were assessed simultaneously using enzymatic analysis on the Roche P Modular system with reagents and calibrators from Roche Diagnostics, using assays approved by the Food and Drug Administration for clinical use (Allain et al. 1974). A preliminary reaction was used to correct for endogenous glycerol during the measurement of triglycerides (Stinshoff et al. 1977). Serum total lipids were calculated using the enzymatic summation formula: total lipids=(2.27×total cholesterol) + triglycerides + 62.31 (Phillips et al. 1989).Study DesignParticipants were asked to complete two interviews, before and approximately 3–4 wk after they received access to their study report. Between the interviews, they were asked to log into MyCHDSReport to view their chemical assay results (MyCHDSReport is described below). Participants were randomized to either of two conditions, Personal Results (PR) group or Aggregate Results (AR) group. They received login information for their report immediately after the pre–report-back interview (hereafter, "preinterview"). Both groups received information about the study-wide results, including the distributions of chemical levels for all participants along with interpretive and contextual information. The PR group also received their individual chemical results. The AR group initially received only the overall study results and then received their individual results after the post–report-back interview (hereafter, "postinterview) (Figure 1). Participants did not know which group they were in until after they were preinterviewed when they opened their report. The PR and AR reports differed only in the omission of personal results from the AR reports.Figure 1. Participants in the MyCHDSReport study completed two interviews, before and 3-4 wk after receiving access to a report with environmental chemical assay results. Participants were randomized to receive a report with their personal chemical levels and aggregate study results, or aggregate results only. Participants in the aggregate results only group gained access to their personal results after completing the postinterview.The sample was further stratified to two types of surveys: a qualitative, semi-structured telephone interview with primarily open-ended questions or a quantitative, structured telephone interview with fixed-response choices (Figure 2). Sixty-eight participants were randomly assigned to qualitative interviews and 227 to structured interviews. Both surveys encompassed similar broad areas—attitudes about environmental exposures, receiving results reports, and participation in CHDS; knowledge and behaviors related to chemical exposures; and communications with social networks. Both interview types included one overlapping section of structured questions about behaviors related to highly fluorinated compounds (PFAS), because this was a topic of emerging concern (Boronow et al. 2019). We report here on website activity for participants in both interview types and on the emotional response and future participation sections of the structured interviews.Figure 2. Participants in the MyCHDSReport study were randomly assigned to a quantitative or qualitative interview. "Not available" participants include those who were deceased, too ill, or lacked valid contact information. Analysis of web analytics includes women in both study groups who received the web report only (darker-blue boxes). Analysis of emotions and interest in future research participation is limited to women in the quantitative group who completed both interviews (orange boxes). Five participants in the quantitative pool and one participant in the qualitative pool who completed the postinterview but did not view their online report and did not receive a hard copy report are excluded from the "Completed postinterview" counts.Structured InterviewsThe structured interviews were administered via computer-assisted telephone interview (CATI) by the Survey Research Group division of the Public Health Institute, Sacramento, California. Verbal consent to participate in the study was received before both the pre- and postinterviews began. Eligible participants were called a maximum of 40 times per interview before they were considered a passive refusal. After individuals were called 20 times, incentives were employed to encourage participation. If the interviewer was unable to reach the participant after 20 call attempts, the participant was mailed a USD $5 incentive letter. For the second interview, if a participant still hadn't completed the interview 2 wk after being mailed the $5 incentive, she was mailed a recruitment invitation that was handwritten on a notecard by a PAC member. To begin the second interview, participants were asked whether they had viewed their MyCHDSReport. If not, the interview was rescheduled for a later time to allow an opportunity to view the report before the interview. Second interviews were conducted 3–4 wk after the first interview and only when the participant said she had viewed her report. This timing allowed a period for participants to view their reports and consider them and was practical for the study team. Completed interviews took approximately 30 min.The first section of interview questions investigated participants' emotions about receiving their personal results. Participants were asked to rate eight feelings they might have about getting their results: interested, helpless, respected, worried, empowered, curious, scared, or informed. Participants could answer that they did not have the feeling or could rate the feeling as very mild, mild, moderate, strong, or very strong. The order of the feeling questions was randomized. For analysis, responses were scored on a scale of 0 (if they said they did not have the feeling) to 5 (if the participant indicated the feeling was very strong). This question format was a novel approach to quantifying emotional responses to report-back. The list of feelings represented topics reported in qualitative studies and discussed in ethics documents. "Interested," "curious," and "informed" represented a domain of feelings related to the potential for report-back to influence environmental health literacy (Altman et al. 2008; Brody et al. 2014; Ramirez-Andreotta et al. 2016a). "Helpless" and "empowered" tapped the theoretical benefit of report-back for addressing power imbalances by sharing expert information (Morello-Frosch et al. 2009), although empowerment may be more likely in place-based studies where study participants can join together with local organizations (Brown et al. 2012). Feelings of being "respected" have been reported from qualitative interviews, an outcome that relates to the ethical conduct of research and may influence recruitment and retention in studies (Adams et al. 2011; Brody et al. 2014; Hernick et al. 2011; Perovich et al. 2018). Qualitative studies have found that participants did not become overly worried or scared, but these possible outcomes have been a recurring concern of researchers (Ohayon et al. 2017). We anticipated that participants would generally feel interested, respected, empowered, curious, and informed about receiving their reports and that these feelings would increase more among those receiving individual than aggregate results. We anticipated that feeling worried, scared, and helpless would be in the lower range of responses and generally remain low after receiving individual results. We anticipated higher levels of concern if participants learned they had unusually high levels of a chemical.The final section of interview questions asked about participants' willingness to participate in future CHDS studies, such as take a phone survey, give additional biological samples, or invite their children or grandchildren to participate in a study. The survey questions relied on here are shown in Supplemental Material, Survey Questions.MyCHDSReportMost participants received their results by logging into the MyCHDSReport secure website using a unique code that was provided at the end of the preinterview (the code was shared verbally, by text message, by email, or by multiple routes, at each participant's request). Reports included blood levels of 42 chemicals, including 7 brominated flame retardants, 11 PFAS, 7 organochlorine pesticides, and 17 PCBs, as well as lipid measurements.MyCHDSReport was created using DERBI, a scalable software framework for generating personalized reports with individual biomonitoring levels (Boronow et al. 2017). Reports were user-centered and encouraged interest and engagement by providing useful and readily accessible contextual information. The development and characteristics of DERBI reports are described in detail in Boronow et al. (2017) and briefly here in the application to CHDS. An example MyCHDSReport is accessible at http://derbidemo.com.MyCHDSReport began with a "welcome page" that reminded participants about the study and introduced the contents of their report (Figure 3). After logging in with a personal password and consenting to receive their report, participants saw a summary page with highlights from the report. In the PR report, the "Chemicals We Found" section of the summary page included "headlines" about notable individual findings—high or low levels of a compound or group of compounds. An individual headline might read, "Your sample had more PCBs than most others in the study." In the AR report, this section gave a brief description of each chemical group that was measured. In both report types, each chemical group name was hyperlinked to a corresponding chemical page with information about sources of exposure, potential health impacts, and strategies for reducing exposure. Chemical results were shown after the contextual information.Figure 3. Participants are first directed to the "welcome page" when accessing their MyCHDSReport. From this page, participants log into their personal report using a unique password. This illustration is from "My CHDS Report" (sample report) on the MyCHDSReport website ( http://derbidemo.com). © 2014 Child Health and Development Studies (CHDS), Silent Spring Institute. Reprinted with permission.Results were presented graphically, using strip plots that showed an individual's chemical level in relation to the study distribution (an example report can be viewed at http://derbidemo.com and major report features are illustrated in Boronow et al. 2017, "Figure 1"). The AR report showed the same graphs without the marker denoting a participant's personal level. The graphs also showed means for U.S. White and Black women ages 40–59 in NHANES. NHANES comparisons for pesticides, PBDEs, and PCBs were weighted arithmetic means of pooled serum concentrations from the 2007–2008 cycle (CDC 2015), and comparisons for PFAS were calculated as geometric means of individual serum concentrations from the 2011–2012 cycle specifying appropriate sample weights and survey design. In addition to graph legends, interpretive text appeared when users held their cursors over different parts of the graphs.The "Overall Study Results" section contained information about the study group as a whole and about broader research results from CHDS. For example, one of the highlights in both PR and AR reports was, "The chemicals in people have changed across the generations. CHDS mothers have higher levels than the daughters for the older chemicals." One goal of the "Overall Study Results" was to help participants understand how their personal results contributed to new scientific findings.Other sections of the PR and AR reports included "What You Can Do," which organized exposure reduction tips across all the chemical groups by topic area (such as "Home," "Food," or "Community"), and the "Health Concerns" section, which highlighted the primary ways that the chemicals in the study might affect health. Reports included phone and email contact information to reach the research team with questions.The report (including text and photographs) was drafted by Silent Spring Institute, and content was reviewed by the CHDS and the CHDS PAC. The PAC members commented on multiple drafts, reviewing content individually and in small groups at the PAC meetings. The prototype web-based report was usability tested by four metro-Boston residents similar in age to the CHDS daughters and then by a CHDS daughter.Web AnalyticsMyCHDSReport recorded participant activity on the website so that we could analyze user behavior. Every event on the website was recorded with a participant identifier and time stamp. To accommodate participants without Internet access, we provided the option for participants to receive a print copy of the MyCHDSReport in the mail on request. Participants also had the option to print a version of the report from the website for the convenience of those who preferred viewing results on paper or wanted to save a printed copy. If a participant requested a printed copy of their MyCHDSReport, verbal consent was obtained over the phone before results were mailed.AnalysisThe analysis of website activity included participants from both the structured and qualitative interview groups who were not mailed a hard copy of the report. The analysis of how participants felt about receiving their results and their intentions to participate in future research was restricted to the structured interview participants who completed both pre- and postinterviews and included those who received a hard copy of the report. Five participants were excluded because they received only a web report and their analytics data showed that they had not logged into their report prior to the postinterview, despite giving a verbal confirmation that they had done so. We examined the differences between Personal Results (PR) and Aggregate Results (AR) participants in website activity, how they felt about getting results and their intentions to participate in future research before and after viewing the MyCHDSReport, and we evaluated the effect of having high chemical levels on the emotional response to report-back. We expected PR participants to spend more time in their reports, and we anticipated that having high chemical level
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