Contemporary Views of Research Participant Willingness to Participate and Share Digital Data in Biomedical Research

Pratap, Abhishek; Allred, Ryan; Duffy, Jaden; Rivera, Donovan; Lee, Heather Sophia; Renn, Brenna N.; Areán, Patricia A.

doi:10.1001/jamanetworkopen.2019.15717

Cited by 31 publications

(43 citation statements)

References 23 publications

(33 reference statements)

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“…However, further research is needed to identify whether and how views on ethical concerns differed between social media platforms and across populations. • Two studies analysed the ethical concerns related to recruitment [6,8]. First study was selected as best paper [6].…”

Section: Discussionmentioning

confidence: 99%

“…The expressed attitudes were highly contextual, depending on factors such as the type of disease or health topic and the entity or person who monitored users on Twitter. In the second paper [8], authors tried to determine whether willingness to participate and willingness to share social media data are associated with the type of research team and online recruitment platform. Participants were significantly less likely to participate in federally sponsored or pharmaceutical company research than university-led studies.…”

Section: Discussionmentioning

confidence: 99%

“…The top five studies [6][7][8][9][10] as ranked by the review of external reviewers reported the following ethical concerns when using social media at different phases in a research study.…”

Section: Best Paper Selectionmentioning

confidence: 99%

“…• Four studies examined public concern [6][7][8][9] and one study provides information on professional concern [10]. • One study reported professional opinions on participant engagement [10].…”

Section: Best Paper Selectionmentioning

confidence: 99%

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Social Media, Research, and Ethics: Does Participant Willingness Matter?

Staccini

Lau

2020

Yearb Med Inform

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Objective: To summarise the state of the art published in 2019 in consumer health informatics and education, with a special emphasis on “Ethics and Health Informatics”. Methods: We conducted a systematic search of articles published in PubMed using a predefined set of queries, which identified 368 potential articles for review. These articles were screened according to topic relevance and 15 were selected for consideration of best paper candidates, which were then presented to a panel of international experts for full paper review and scoring. The top five papers according to the external reviewers’ ranking were discussed in a consensus meeting. Finally, the paper that received the highest score from four of the five experts was selected as the best paper on social media and ethics for patients and consumers of the year 2019. Results: Despite using the terms “ethics” and “ethical” in the search query, we retrieved very few articles. The bibliometric analysis identified three major clusters centred on “social”, “health”, and “study”. Among the top five papers, one was a review where the authors identified ethical issues across four areas at the intersection of social media and health: 1) the impact of social networking sites on the doctor-patient relationship; 2) the development of e-health platforms to deliver care; 3) the use of online data and algorithms to inform health research; and 4) the broader public health consequences of widespread social media use. The other papers highlighted ethical concerns in using social media to interact with patients at different phases of a clinical research protocol, such as recruitment phase, participant engagement, data linkage, and detection and monitoring of adverse events. Conclusions: Findings suggest that most users do not think that using social media for patient monitoring in clinical research, for example using Twitter for clinical trial recruitment, constitutes inappropriate surveillance or a violation of privacy. However, further research is needed to identify whether and how views on ethical concerns differed between social media platforms and across populations.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Best Paper Selectionmentioning

confidence: 99%

Section: Best Paper Selectionmentioning

confidence: 99%

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Social Media, Research, and Ethics: Does Participant Willingness Matter?

Staccini

Lau

2020

Yearb Med Inform

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“…Practically speaking, it is nearly impossible to guarantee anonymity, in that when more data about an individual becomes available it might reveal patterns of behavior or characteristics that could reveal the individual's identity. Research has shown that the willingness to participate in biomedical research advertised on social media platforms and search engines, as well as the willingness to share digital data with researchers, have been affected by recent news on the misuse of such data [39]. However, research about willingness to share data in health social media is still in its infancy and hence, further research in this space within a participatory health paradigm is warranted [40].…”

Section: Data Privacy Security and Quality Assurance Are The Most Rmentioning

confidence: 99%

Ethical Considerations for Participatory Health through Social Media: Healthcare Workforce and Policy Maker Perspectives

et al. 2020

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Summary Objectives: To identify the different ethical issues that should be considered in participatory health through social media from different stakeholder perspectives (i.e., patients/service users, health professionals, health information technology (If) professionals, and policy makers) in any healthcare context. Methods: We implemented a two-round survey composed of open ended questions in the first round, aggregated into a list of ethical issues rated for importance by participants in the second round, to generate a ranked list of possible ethical issues in participatory health based on healthcare professionals’ and policy makers’ opinions on both their own point of view and their beliefs for other stakeholders’ perspectives. Results: Twenty-six individuals responded in the first round of the survey. Multiple ethical issues were identified for each perspective. Data privacy, data security, and digital literacy were common themes in all perspectives. Thirty-three individuals completed the second round of the survey. Data privacy and data security were ranked among the three most important ethical issues in all perspectives. Quality assurance was the most important issue from the healthcare professionals’ perspective and the second most important issue from the patients’ perspective. Data privacy was the most important consideration for patients/service users. Digital literacy was ranked as the fourth most important issue, except for policy makers’ perspective. Conclusions: Different stakeholders’ opinions fairly agreed that there are common ethical issues that should be considered across the four groups (patients, healthcare professionals, health IT professionals, policy makers) such as data privacy, security, and quality assurance.

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Association of Demographic and Socioeconomic Indicators With the Use of Wearable Devices Among Children

et al. 2023

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ImportanceThe use of consumer-grade wearable devices for collecting data for biomedical research may be associated with social determinants of health (SDoHs) linked to people’s understanding of and willingness to join and remain engaged in remote health studies.ObjectiveTo examine whether demographic and socioeconomic indicators are associated with willingness to join a wearable device study and adherence to wearable data collection in children.Design, Setting, and ParticipantsThis cohort study used wearable device usage data collected from 10 414 participants (aged 11-13 years) at the year-2 follow-up (2018-2020) of the ongoing Adolescent Brain and Cognitive Development (ABCD) Study, performed at 21 sites across the United States. Data were analyzed from November 2021 to July 2022.Main Outcomes and MeasuresThe 2 primary outcomes were (1) participant retention in the wearable device substudy and (2) total device wear time during the 21-day observation period. Associations between the primary end points and sociodemographic and economic indicators were examined.ResultsThe mean (SD) age of the 10 414 participants was 12.00 (0.72) years, with 5444 (52.3%) male participants. Overall, 1424 participants (13.7%) were Black; 2048 (19.7%), Hispanic; and 5615 (53.9%) White. Substantial differences were observed between the cohort that participated and shared wearable device data (wearable device cohort [WDC]; 7424 participants [71.3%]) compared with those who did not participate or share data (no wearable device cohort [NWDC]; 2900 participants [28.7%]). Black children were significantly underrepresented (−59%) in the WDC (847 [11.4%]) compared with the NWDC (577 [19.3%]; P &lt; .001). In contrast, White children were overrepresented (+132%) in the WDC (4301 [57.9%]) vs the NWDC (1314 [43.9%]; P &lt; .001). Children from low-income households (&lt;$24 999) were significantly underrepresented in WDC (638 [8.6%]) compared with NWDC (492 [16.5%]; P &lt; .001). Overall, Black children were retained for a substantially shorter duration (16 days; 95% CI, 14-17 days) compared with White children (21 days; 95% CI, 21-21 days; P &lt; .001) in the wearable device substudy. In addition, total device wear time during the observation was notably different between Black vs White children (β = −43.00 hours; 95% CI, −55.11 to −30.88 hours; P &lt; .001).Conclusions and RelevanceIn this cohort study, large-scale wearable device data collected from children showed considerable differences between White and Black children in terms of enrollment and daily wear time. While wearable devices provide an opportunity for real-time, high-frequency contextual monitoring of individuals’ health, future studies should account for and address considerable representational bias in wearable data collection associated with demographic and SDoH factors.

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Contemporary Views of Research Participant Willingness to Participate and Share Digital Data in Biomedical Research

Cited by 31 publications

References 23 publications

Social Media, Research, and Ethics: Does Participant Willingness Matter?

Social Media, Research, and Ethics: Does Participant Willingness Matter?

Ethical Considerations for Participatory Health through Social Media: Healthcare Workforce and Policy Maker Perspectives

Association of Demographic and Socioeconomic Indicators With the Use of Wearable Devices Among Children

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