Project Overview
This project explores the ethical, social, and economic implications of online health platforms that promote participatory models of data collection and utilization. These platforms, often heralded for democratizing healthcare, also raise significant concerns about privacy, data commodification, and exploitation. By using qualitative interviews and reviewing the literature, this project examined how such platforms influence healthcare dynamics. While these platforms fostered user empowerment, they simultaneously created environments where new forms of surveillance may emerge. This project emphasized the importance of addressing these concerns through rigorous technology assessment (TA), particularly in regions governed by strict data protection regulations such as the General Data Protection Regulation (GDPR) in Europe. By examining the socio-ethical challenges these platforms introduce, the study suggests pathways for ensuring that the benefits of participatory platforms are distributed equitably and ethically.
Data and Data Collection Overview
This study uses a qualitative research design, combining interviews with active users of participatory health platforms and a critical literature review. The research was conducted from 2019 to 2021, with interviews focusing on users of the PatientsLikeMe (PLM) platform, a global health community that allows users to share health experiences, treatment data, and personal stories. Twenty participants were recruited through PatientsLikeMe between March 2019 and May 2021. The interviews, each lasting between 60 and 90 minutes, were conducted via video conferencing platforms due to the restrictions imposed by the COVID-19 pandemic. Interview questions focused on participants’ experiences with data sharing, their perceptions of privacy, and their understanding of how their health data were used by the platform. Participants were also asked about their motivations for participating in the platform and any concerns they had about the commodification of their personal health data.
The interviews were pseudonymized to protect participants’ identities, and all personal data were stored securely in accordance with GDPR regulations. Given the sensitive nature of health data, particular attention was paid to data security, both during the interviews and in the subsequent analysis.
The interview data were analyzed using a grounded theory approach informed by a constructivist approach, which focuses on the co-production of meaning between participants and researcher. This involved coding the transcripts for key themes and patterns. The coding process was iterative, with themes such as empowerment, privacy concerns, and the commodification of health data emerging from the data. A literature review complemented the interview findings by contextualizing these themes within broader ethical discussions surrounding participatory health platforms. Particular attention was paid to how GDPR, and similar regulations in other regions, influence users’ experiences and perceptions of privacy on these platforms.
Selection and Organization of Shared Data
The key data file shared here summarizes observational notes from interviews with all 20 participants in the study, detailing contextual insights gathered during interviews, which contribute to a deeper understanding of participant perspectives. The documentation files shared consist of the original informed consent used, a thematic codebook developed during analysis, this Data Narrative and an administrative README file. |
