Perspectives on Health Data Sharing Among Patients With Somatic and Mental Health Diseases: Focus Group Study

The German Health Data Utilization Act and the Digital Act aim to enhance health data sharing for health care and research in Germany and beyond while ensuring robust data protection. A key prerequisite is patients' willingness to share their data for primary use (PU), such as medical care, and secondary use (SU), such as research. There is a lack of qualitative research examining patients' perspectives on data sharing under the new legal framework, especially among vulnerable groups, such as those with mental health diseases.

This study qualitatively examines the factors influencing German patients' willingness to share their digital health data for PU and SU, exploring similarities and differences between patients with somatic and mental health diseases.

In 2024, we conducted 2 focus groups (FGs) with 13 outpatients: 7 with somatic diseases (FG1) and 6 with mental health diseases (FG2). Participants were recruited from a University Hospital in Dresden, Germany, based on predefined criteria. Discussions followed a topic guide with open-ended questions informed by an overview of reviews and pretests. Data were analyzed independently by 2 researchers using Kuckartz's approach. Findings are reported according to the COREQ (Consolidated Criteria for Reporting Qualitative Research) checklist.

A total of 10 main categories with 32 subcategories were identified as influencing factors: previous data-sharing experience, individual usefulness for medical care, public benefit, personal and privacy concerns, data security concerns, consent management preferences, technical safety measures, legal and ethical framework conditions and requirements, informational self-determination, and social involvement and influence. Both FGs highlighted individual usefulness and public benefit despite various personal experiences. Concerns about discrimination, stigmatization, and automatic data sharing were more relevant in FG2. Technical safety measures of anonymization and pseudonymization were discussed in detail in FG1, whereas FG2 debated data protection intensively. There were concerns that data protection in Germany could potentially pose a greater health risk than the sharing of personal health data. The category consent management preferences yielded the most statements, but no clear consensus emerged. Social influence and involvement, including family, peers, and health care professionals, were more relevant in FG2. Both FGs explicitly opposed the use of health data by companies such as Google.

This study qualitatively compared the perspectives of patients with somatic and mental health diseases. While it revealed similarities, patients with mental health diseases viewed their data as highly sensitive due to experiences of stigmatization and fear of misuse, emphasizing the need for tailored consent management. Involving family, peers, and health care professionals can increase acceptance. Health care professionals and targeted outreach can ensure transparency, raising awareness about data sharing policies to build trust, especially when commercial interests are involved. Knowledge deficits, even among tech-savvy patients, indicate the need for broad and understandable public relations efforts.