From 2019 to 2021, Dana Mahr conducted 20 qualitative interviews with users of the PatientsLikeMe health platform. The interviews, lasting 60-90 minutes, focused on experiences with data sharing, privacy perceptions, and data commodification. The data was pseudonymized and analyzed using a grounded theory approach.
Use Cases
- Analyzing patient perceptions of privacy and data commodification based on interview transcripts.
- Studying motivations for participation in online health communities based on user-reported experiences.
- Examining the influence of GDPR regulations on user attitudes towards health data sharing.
- Identifying themes of empowerment and surveillance in user narratives about platform engagement.
Strengths
- 20 participant interviews provide a substantive qualitative sample.
- Interview durations of 60-90 minutes suggest depth of discussion.
- Data collection spanned March 2019 to May 2021, offering a multi-year perspective.
- Pseudonymization and secure storage indicate adherence to GDPR data protection standards.
Limitations
- Row count and column-level documentation are unknown, limiting suitability assessment.
- The dataset consists of qualitative interview text; quantitative analysis is not applicable.
- The sample is limited to users of a single platform (PatientsLikeMe), which may introduce source bias.
Provenance
- Source
- QDR Harvested Dataverse
- Collection Method
- Qualitative interviews and critical literature review.
- Time Range
- 2019-2021
- Freshness
- Last updated 2026-05-04 07:13:11; freshness should be verified.