Dataset Information

User Perspectives of a Web-Based Data-Sharing Platform (Open Humans) on Ethical Oversight in Participant-Led Research: Protocol for a Quantitative Study.

ABSTRACT: BACKGROUND:Advances in medicine rely to a great extent on people's willingness to share their data with researchers. With increasingly widespread use of digital technologies, several Web-based communities have emerged aiming to enable their users to share large amounts of data, some of which can possibly be employed for research purposes by scientists, or to conduct participant-led research (PLR). Scholarship has recently addressed the necessity of interrogating how existing ethical standards can and should be applied and adapted in view of the specificities of such Web-based activities. So far, no study has explored participants' beliefs about and attitudes toward ethical oversight when it comes to platforms that involve medical data sharing. OBJECTIVE:This paper presents the protocol for a survey study aimed at understanding users' beliefs about Web-based data-sharing platforms regarding how research ethics principles should be applied in such a setting. Furthermore, the study aims at quantitatively assessing the relationship between participants' perspectives on ethical oversight and other variables such as previous participation in research, beliefs about data sharing, and attitudes toward self-experimentation. METHODS:We are conducting a Web-based survey with users of a popular Web-based data-sharing platform, Open Humans. The survey has been sent to approximately 4640 users registered for the Open Humans newsletter. To fill out the survey, participants need to have an account on Open Humans. We expect a 5%-10% response rate (between 200 and 400 completed surveys out of approximately 4000 survey invitations sent). Independent variables include past data-sharing behavior and intention, beliefs about data sharing, past participation in research, attitudes toward self-experimentation, perceived knowledge of the platform's guidelines and terms, perceived importance of having transparent guidelines, and governance-related beliefs. The main dependent variable is participants' expectations regarding who should ensure that ethical requirements are met within research projects conducted on open data-sharing platforms, based on Emanuel et al's ethical framework. We will use chi-square tests to assess the relationship between participants' expectations regarding ethical oversight and their past behavior, future intentions, beliefs, attitudes, and knowledge. RESULTS:Data collection started on June 13, 2018. A reminder to fill out the survey was sent to participants in mid-July. We expect to gain insights on users' perspectives on the ethical oversight of Web-based data-sharing platforms and on the associated experiences, beliefs, and sociodemographic characteristics. CONCLUSIONS:When digital tools allow people to engage in PLR including medical data, understanding how people interpret and envision the ethical oversight of their data-sharing practices is crucial. This will be the first study to explore users' perspectives on ethical oversight of Web-based data-sharing platforms. The results will help inform the development of a framework that can be employed for platforms hosting various kinds of research projects to accommodate participants' ethical oversight needs. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID):RR1-10.2196/10939.

SUBMITTER: Fadda M

PROVIDER: S-EPMC6291678 | biostudies-other | 2018 Nov

REPOSITORIES: biostudies-other

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User Perspectives of a Web-Based Data-Sharing Platform (Open Humans) on Ethical Oversight in Participant-Led Research: Protocol for a Quantitative Study.

Fadda Marta M Jobin Anna A Blasimme Alessandro A Greshake Tzovaras Bastian B Price Ball Mad M Vayena Effy E

JMIR research protocols 20181128 11

<h4>Background</h4>Advances in medicine rely to a great extent on people's willingness to share their data with researchers. With increasingly widespread use of digital technologies, several Web-based communities have emerged aiming to enable their users to share large amounts of data, some of which can possibly be employed for research purposes by scientists, or to conduct participant-led research (PLR). Scholarship has recently addressed the necessity of interrogating how existing ethical stan ...[more]

PMID: 30487120

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Project description:BackgroundModern research is heavily reliant on online and mobile technologies, which is particularly true among historically hard-to-reach populations such as gay, bisexual, and other men who have sex with men (GBMSM). Despite this, very little empirical research has been published on participant perspectives about issues such as privacy, trust, and data sharing.ObjectiveThe objective of our study was to analyze data from an online sample of 11,032 GBMSM in the United States to examine their trust in and perspectives on privacy and data sharing within online and mobile research.MethodsParticipants were recruited via a social networking site or sexual networking app to complete an anonymous online survey. We conducted a series of repeated measures analyses adjusted for between-person factors to examine within-person differences in the following: (1) trust for guarding personal information across different venues (eg, online research conducted by a university vs. an online search engine); (2) privacy concerns about 12 different types of data for three distinct data activities (ie, collection by app owners, anonymous selling to third parties, and anonymous sharing with researchers); and (3) willingness to share those 12 different types of data with researchers. Due to the large sample size, we primarily reported measures of effect size as evidence of clinical significance.ResultsOnline research was rated as most trusted and was more trusted than online and mobile technology companies, such as app owners and search engines, by magnitudes of effect that were moderate-to-large (?partial2=0.06-0.11). Responding about 12 different types of data, participants expressed more concerns about data being anonymously sold to third-party partners (mean 7.6, median 10.0) and fewer concerns about data being collected by the app owners (mean 5.8, median 5.0) or shared anonymously with researchers (mean 4.6, median 3.0); differences were small-to-moderate in size (?partial2=0.01-0.03). Furthermore, participants were most willing to share their public profile information (eg, age) with researchers but least willing to share device usage information (eg, other apps installed); the comparisons were small-to-moderate in size (?partial2=0.03).ConclusionsParticipants reported high levels of trust in online and mobile research, which is noteworthy given recent high-profile cases of corporate and government data security breaches and privacy violations. Researchers and ethical boards should keep up with technological shifts to maintain the ability to guard privacy and confidentiality and maintain trust. There was substantial variability in privacy concerns about and willingness to share different types of data, suggesting the need to gain consent for data sharing on a specific rather than broad basis. Finally, we saw evidence of a privacy paradox, whereby participants expressed privacy concerns about the very types of data-related activities they have likely already permitted through the terms of the apps and sites they use regularly.

Project description:BackgroundDemanding working conditions and secondary exposure to trauma may contribute to a high burden of stress among 9-1-1 telecommunicators, decreasing their ability to work effectively and efficiently. Web-based mindfulness-based interventions (MBIs) can be effective in reducing stress in similar populations. However, low engagement may limit the effectiveness of the intervention.ObjectiveThe aim of this study was to assess participant engagement in a Web-based MBI designed for 9-1-1 telecommunicators. Specifically, we sought to describe the following: (1) participant characteristics associated with intervention engagement, (2) participant perspectives on engaging with the intervention, and (3) perceived challenges and facilitators to engaging.MethodsWe used qualitative and quantitative data from participant surveys (n=149) that were collected to assess the efficacy of the intervention. We conducted descriptive and bivariate analyses to identify associations between demographic, psychosocial, and workplace characteristics and engagement. We conducted a thematic analysis of qualitative survey responses to describe participant experiences with the MBI.ResultsWe found that no individual participant characteristics were associated with the level of engagement (low vs high number of lessons completed). Participant engagement did vary by the call center (P<.001). We identified the following overarching qualitative themes: (1) the participants perceived benefits of mindfulness practice, (2) the participants perceived challenges to engage with mindfulness and the intervention, and (3) intervention components that facilitated engagement. The participants expressed positive beliefs in the perceived benefits of practicing mindfulness, including increased self-efficacy in coping with stressors and increased empathy with callers. The most commonly cited barriers were work-related, particularly not having time to participate in the intervention at work. Facilitators included shorter meditation practices and the availability of multiple formats and types of intervention content.ConclusionsThe findings of this study suggest that efforts to improve intervention engagement should focus on organizational-level factors rather than individual participant characteristics. Future research should explore the effect of mindfulness practice on the efficiency and effectiveness of 9-1-1 telecommunicators at work.Trial registrationClinicalTrials.gov NCT02961621; https://clinicaltrials.gov/ct2/show/NCT02961621.

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Dataset Information

User Perspectives of a Web-Based Data-Sharing Platform (Open Humans) on Ethical Oversight in Participant-Led Research: Protocol for a Quantitative Study.

Publications

User Perspectives of a Web-Based Data-Sharing Platform (Open Humans) on Ethical Oversight in Participant-Led Research: Protocol for a Quantitative Study.

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