Background Digital health research repositories propose sharing longitudinal streams of health records and personal sensing data between multiple projects and researchers. Motivated by the prospect of personalizing patient care (precision medicine), these initiatives demand broad public acceptance and large numbers of data contributors, both of which are challenging. Objective This study investigates public attitudes toward possibly contributing to digital health research repositories to identify factors for their acceptance and to inform future developments. Methods A cross-sectional online survey was conducted from March 2020 to December 2020. Because of the funded project scope and a multicenter collaboration, study recruitment targeted young adults in Denmark and Brazil, allowing an analysis of the differences between 2 very contrasting national contexts. Through closed-ended questions, the survey examined participants’ willingness to share different data types, data access preferences, reasons for concern, and motivations to contribute. The survey also collected information about participants’ demographics, level of interest in health topics, previous participation in health research, awareness of examples of existing research data repositories, and current attitudes about digital health research repositories. Data analysis consisted of descriptive frequency measures and statistical inferences (bivariate associations and logistic regressions). Results The sample comprises 1017 respondents living in Brazil (1017/1600, 63.56%) and 583 in Denmark (583/1600, 36.44%). The demographics do not differ substantially between participants of these countries. The majority is aged between 18 and 27 years (933/1600, 58.31%), is highly educated (992/1600, 62.00%), uses smartphones (1562/1600, 97.63%), and is in good health (1407/1600, 87.94%). The analysis shows a vast majority were very motivated by helping future patients (1366/1600, 85.38%) and researchers (1253/1600, 78.31%), yet very concerned about unethical projects (1219/1600, 76.19%), profit making without consent (1096/1600, 68.50%), and cyberattacks (1055/1600, 65.94%). Participants’ willingness to share data is lower when sharing personal sensing data, such as the content of calls and texts (1206/1600, 75.38%), in contrast to more traditional health research information. Only 13.44% (215/1600) find it desirable to grant data access to private companies, and most would like to stay informed about which projects use their data (1334/1600, 83.38%) and control future data access (1181/1600, 73.81%). Findings indicate that favorable attitudes toward digital health research repositories are related to a personal interest in health topics (odds ratio [OR] 1.49, 95% CI 1.10-2.02; P=.01), previous participation in health research studies (OR 1.70, 95% CI 1.24-2.35; P=.001), and awareness of examples of research repositories (OR 2.78, 95% CI 1.83-4.38; P<.001). Conclusions This study reveals essential factors for acceptance and willingness to share personal data with digital health research repositories. Implications include the importance of being more transparent about the goals and beneficiaries of research projects using and re-using data from repositories, providing participants with greater autonomy for choosing who gets access to which parts of their data, and raising public awareness of the benefits of data sharing for research. In addition, future developments should engage with and reduce risks for those unwilling to participate.
The COVID-19 pandemic has intensified the need for mental health support across the whole spectrum of the population. Where global demand outweighs the supply of mental health services, established interventions such as cognitive behavioural therapy (CBT) have been adapted from traditional face-to-face interaction to technology-assisted formats. One such notable development is the emergence of Artificially Intelligent (AI) conversational agents for psychotherapy. Pre-pandemic, these adaptations had demonstrated some positive results; but they also generated debate due to a number of ethical and societal challenges. This article commences with a critical overview of both positive and negative aspects concerning the role of AI-CBT in its present form. Thereafter, an ethical framework is applied with reference to the themes of (1) beneficence, (2) non-maleficence, (3) autonomy, (4) justice, and (5) explicability. These themes are then discussed in terms of practical recommendations for future developments. Although automated versions of therapeutic support may be of appeal during times of global crises, ethical thinking should be at the core of AI-CBT design, in addition to guiding research, policy, and real-world implementation as the world considers post-COVID-19 society.
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In clinical cohort studies, researchers analyse the life history of population groups to understand the evolution of diseases. Health research data platforms came to facilitate such studies as they allow multiple projects to share access to cohorts' non-identifiable health information. Some latest initiatives are also starting to include mobile-generated data in their research programmes. Although seemly beneficial, it is not yet clear how potential participants feel about contributing to the new platforms: there is a need to investigate potential factors related to the acceptance in this specific context. In this paper, previous works from related contexts were brought together and, along with a qualitative study, composed a participant-centred perspective of enablers and barriers for contribution. We found that there is an apparent misalignment between current implementations and participants' preferences, leading us to propose design guidelines for future developments which can make participation more ethical and engaging.
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