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:BackgroundTeletherapy apps have emerged as a promising alternative to traditional in-person therapy, especially after the COVID-19 pandemic, as they help overcome a range of geographical and emotional barriers to accessing care. However, the rapid proliferation of teletherapy apps has occurred in an environment in which development has outpaced the various regulatory and ethical considerations of this space. Thus, researchers have raised concerns about the ethical implications and potential risks of teletherapy apps given the lack of regulation and oversight. Teletherapy apps have distinct aims to more directly replicate practices of traditional care, as opposed to mental health apps, which primarily provide supplemental support, suggesting a need to examine the ethical considerations of teletherapy apps from the lens of existing ethical guidelines for providing therapy.ObjectiveIn this study, we examined user reviews of commercial teletherapy apps to understand user perceptions of whether and how ethical principles are followed and incorporated.MethodsWe identified 8 mobile apps that (1) provided teletherapy on 2 dominant mobile app stores (Google Play and Apple App Store) and (2) had received >5000 app reviews on both app stores. We wrote Python scripts (Python Software Foundation) to scrape user reviews from the 8 apps, collecting 3268 user reviews combined across 2 app stores. We used thematic analysis to qualitatively analyze user reviews, developing a codebook drawing from the ethical codes of conduct for psychologists, psychiatrists, and social workers.ResultsThe qualitative analysis of user reviews revealed the ethical concerns and opportunities of teletherapy app users. Users frequently perceived unprofessionalism in their teletherapists, mentioning that their therapists did not listen to them, were distracted during therapy sessions, and did not keep their appointments. Users also noted technical glitches and therapist unavailability on teletherapy apps that might affect their ability to provide continuity of care. Users held varied opinions on the affordability of those apps, with some perceiving them as affordable and others not. Users further brought up that the subscription model resulted in unfair pricing and expressed concerns about the lack of cost transparency. Users perceived that these apps could help promote access to care by overcoming geographical and social constraints.ConclusionsOur study suggests that users perceive commercial teletherapy apps as adhering to many ethical principles pertaining to therapy but falling short in key areas regarding professionalism, continuity of care, cost fairness, and cost transparency. Our findings suggest that, to provide high-quality care, teletherapy apps should prioritize fair compensation for therapists, develop more flexible and transparent payment models, and invest in measures to ensure app stability and therapist availability. Future work is needed to develop standards for teletherapy and improve the quality and accessibility of those services.

Project description:BackgroundIn the asymptomatic "preclinical" phase of Alzheimer's disease (AD), abnormal biomarkers indicate risk for developing cognitive impairment. Biomarker information is increasingly being disclosed to participants in research settings, and biomarker testing and results disclosure will be implemented in clinical settings in the future. Biomarker disclosure has potential psychosocial benefits and harms, impacting affected individuals and their support person(s). Limited data are available about with whom research participants share their results, information that will be necessary to develop disclosure protocols and post-disclosure resources. Additionally, existing research has been conducted in largely White cohorts, limiting applicability to future clinical populations.MethodsWe enrolled a diverse cohort of 329 adults (184 non-Hispanic White and 145 Black/African American individuals) who previously participated in AD research. After reviewing a vignette describing a hypothetical biomarker research study, participants indicated their anticipated willingness to share biomarker results with loved ones, and what reactions they anticipated from others. Using mixed-methods analysis, we identified responses related to willingness to share results.ResultsA majority (78.7%) were willing to share their results with support persons. Many (59.6%) felt it would not be difficult to share, and most (90.6%) believed their loved ones would be supportive. The most common reasons for sharing were to prepare for possible future AD (41.0% of respondents), while the most common reason for not sharing was to avoid worrying loved ones (4.8% of respondents). A total of 7.3% of respondents related reasons regarding being unsure about sharing.DiscussionParticipants' interest in sharing results supports integrating support persons into AD biomarker research, and may help maximize potential benefits for participants. Communicating with this "dyad" of research participant and support person(s) may improve involvement in research, and help prepare for implementation of clinical biomarker testing by clarifying communication preferences and the influence of support persons on psychosocial outcomes.

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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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