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Perceived Risks, Benefits, and Interest in Participating in Environmental Health Studies That Share Personal Exposure Data: A U.S. Survey of Prospective Participants.

ABSTRACT: Little is known about the willingness of prospective study participants to share environmental health data. To fill this gap, we conducted a hypothetical vignette survey among 1,575 women who have volunteered to be contacted about breast cancer studies. Eighty-three percent were interested in participating in the environmental studies, with little difference whether data were restricted to the research team, shared with approved researchers, or publicly accessible. However, participants somewhat preferred controlled access for children's data. Respondents were more interested in studies with environmental rather than biological samples and more interested when researchers would return personal results, a practice of increasing importance. They were more reluctant to share location or to participate if studies involved electronic medical records. Many expressed concerns about privacy, particularly security breaches, but reidentification risks were mentioned infrequently, indicating that this topic should be discussed during informed consent.

SUBMITTER: Udesky JO

PROVIDER: S-EPMC7429332 | biostudies-literature | 2020 Dec

REPOSITORIES: biostudies-literature

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Perceived Risks, Benefits, and Interest in Participating in Environmental Health Studies That Share Personal Exposure Data: A U.S. Survey of Prospective Participants.

Udesky Julia O JO Boronow Katherine E KE Brown Phil P Perovich Laura J LJ Brody Julia Green JG

Journal of empirical research on human research ethics : JERHRE 20200215 5

Little is known about the willingness of prospective study participants to share environmental health data. To fill this gap, we conducted a hypothetical vignette survey among 1,575 women who have volunteered to be contacted about breast cancer studies. Eighty-three percent were interested in participating in the environmental studies, with little difference whether data were restricted to the research team, shared with approved researchers, or publicly accessible. However, participants somewhat ...[more]

PMID: 32065041

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Project description:BackgroundTracking individuals in environmental epidemiological studies using novel mobile phone technologies can provide valuable information on geolocation and physical activity, which will improve our understanding of environmental exposures.ObjectiveThe objective of this study was to assess the performance of one of the least expensive mobile phones on the market to track people's travel-activity pattern.MethodsAdults living and working in Barcelona (72/162 bicycle commuters) carried simultaneously a mobile phone and a Global Positioning System (GPS) tracker and filled in a travel-activity diary (TAD) for 1 week (N=162). The CalFit app for mobile phones was used to log participants' geographical location and physical activity. The geographical location data were assigned to different microenvironments (home, work or school, in transit, others) with a newly developed spatiotemporal map-matching algorithm. The tracking performance of the mobile phones was compared with that of the GPS trackers using chi-square test and Kruskal-Wallis rank sum test. The minute agreement across all microenvironments between the TAD and the algorithm was compared using the Gwet agreement coefficient (AC1).ResultsThe mobile phone acquired locations for 905 (29.2%) more trips reported in travel diaries than the GPS tracker (P<.001) and had a median accuracy of 25 m. Subjects spent on average 57.9%, 19.9%, 9.0%, and 13.2% of time at home, work, in transit, and other places, respectively, according to the TAD and 57.5%, 18.8%, 11.6%, and 12.1%, respectively, according to the map-matching algorithm. The overall minute agreement between both methods was high (AC1 .811, 95% CI .810-.812).ConclusionsThe use of mobile phones running the CalFit app provides better information on which microenvironments people spend their time in than previous approaches based only on GPS trackers. The improvements of mobile phone technology in microenvironment determination are because the mobile phones are faster at identifying first locations and capable of getting location in challenging environments thanks to the combination of assisted-GPS technology and network positioning systems. Moreover, collecting location information from mobile phones, which are already carried by individuals, allows monitoring more people with a cheaper and less burdensome method than deploying GPS trackers.

Project description:IntroductionSports participation has many physical and mental health benefits for individuals with a disability, including improved functionality and reduced anxiety. Despite this, a large proportion of individuals with a disability are inactive. This review will be the first to synthesise the literature on the experiences and perceived health benefits of sport participation for children, adolescents, adults, elite athletes and veterans with a disability. Investigation of these phenomena will enable an understanding of the positive aspects and benefits of sport participation specific to each population, which may help to improve participation rates and ultimately improve health through promotion of these benefits.MethodsA protocol for systematic review is reported in line with Preferred Reporting Items for Systematic Reviews and Meta-Analysis-P. The phenomena of interest are the experiences and perceived health benefits of individuals with a disability participating in sport. There will be no age limit on participants and all study designs, besides reviews, will be included. Studies in languages other than English will be excluded. Two independent reviewers will conduct the searches, study selection, data collection and quality assessment independently. The online databases MEDLINE, EMBASE, PsychINFO, CINAHL Plus, Web of Science and SportDiscus will be electronically searched from database inception to February 2020. Grey literature will be searched and several sport-related journals will be hand-searched. The Quality Assessment Tool for Studies with Diverse Designs will be used for quality assessment of included studies. Thematic synthesis will be used to analyse the qualitative studies, narrative synthesis will be used to analyse the quantitative studies and the perceived health benefits will be analysed using content analysis. The strength of the overall body of evidence will be assessed and reported using GRADE-CERQual (Grading of Recommendations, Assessment, Development and Evaluation-Confidence in the Evidence from Reviews of Qualitative research) for qualitative studies and GRADE for quantitative studies. These approaches will be applied to mixed-methods studies, respectively, where necessary.Ethics and disseminationThis systematic review raises no ethical issues. Results will be published in a peer reviewed journal and disseminated to key stakeholders to inform practice.Prospero registration numberCRD42020169224.

Project description:In order to minimize climate change it is important that people take up a sustainable lifestyle. Sustainable lifestyles call for pro-environmental behaviors (PEBs) in several domains, such as in-home energy use, mobility, and consumption of food and goods. However, studies show that people often do not consistently behave pro-environmentally in all domains. In this study we investigated how a combination of personal motivation, and the difficulty and the perceived effort of a PEB, predicts the performance of PEBs in various domains, using a survey (n = 1,536). By means of Rasch analysis we identified the difficulty of 17 PEBs and estimated respondents' pro-environmental motivations. In addition, we investigated if performance of certain PEBs increased the probability of performing other PEBs. This way we could identify for each level of motivation which behaviors respondents were (probably) performing and which behaviors they did not yet perform, but would be least effortful new behaviors. Furthermore, using a non-recursive structural equation model we investigated the relations between perceived effort, PEB performance, motivation, underlying traits, and demographics. Results showed a feedback loop between motivation and perceived effort: when respondents were motivated they perceived behaviors as less effortful and also lower perception of effort was related to higher motivation. Our results imply that people mainly perform PEBs that fit their level of pro-environmental motivation and that they are inclined to do the things of which they can justify the effort they need to invest. This amount of effort seems quite similar for people: no one wants to invest too much effort, but people highly differ in how effortful they assess different behaviors. Our study thus indicates that rationalizations play a key role. Encouraging people to embrace more sustainable lifestyles may involve step-by-step increases in PEB performance. We propose that people should be encouraged to perform behaviors that are closest to their current motivation level in order for them to progress from performing easy to more difficult PEBs.

Dataset Information

Perceived Risks, Benefits, and Interest in Participating in Environmental Health Studies That Share Personal Exposure Data: A U.S. Survey of Prospective Participants.

Publications

Perceived Risks, Benefits, and Interest in Participating in Environmental Health Studies That Share Personal Exposure Data: A U.S. Survey of Prospective Participants.

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