2026 ECNP Congress

PS04-4062

Who shares and why? Assessing psychiatric patients’ attitudes toward health data sharing using the standard health consent in Germany

F. Gerrik Verhees — A. Dridi, S. Brückner, H. Widengren, C. Welzel, A. Pfennig, A. Schlicht, J. Schmitt, M. Scheibe, C. Lang, S. Fesl, S. Gilbert · TUD Dresden University of Technology, Department of Psychiatry and Psychotherapy, Dresden, Germany

2026 ECNP Congress

INTRODUCTION

Smartphones and wearables generate vast quantities of person-generated health data (PGHD) [1], holding promise for personalised care (primary use) and research, health technology development, and public health surveillance (secondary use) [2]. Yet whether patients are willing to share this data and under what conditions, remains poorly studied in clinical settings. The Standard Health Consent (SHC) addresses this through a centralised, user-driven platform integrating broad, dynamic, and meta-consent [3,4]. While patients with mental illness expressed their willingness to share data for secondary use in qualitative studies, clinical evidence is still absent.

AIMS

To assess psychiatric patients’ attitudes toward sharing app-generated health data and examine how usability, trust, comprehension, and engagement with the SHC relate to consent decisions.

METHODS

A prospective pre-post study (DRKS00038316) enrolled 53 adults (≥18 years) with a psychiatric diagnosis across three service units at UKDD, TU Dresden. At baseline (T0), patients and therapists completed a survey to assess their attitudes towards data sharing. At T1, patients accessed a REDCap-based SHC simulation embedded in a mood tracker app, set initial data sharing preferences, and completed an adapted PHQ-2. The following days (T2–28), daily email invitations prompted PHQ-2 completion, each followed by a prompt to review SHC consent settings. At T28, patients completed end-of-study questionnaires on usability (SUS, MARS), trust (TrustDiff), comprehension, and attitudes (post). Therapists completed a utility assessment of shared PHQ-2 data.

RESULTS

The sample comprised 53 participants with a young age profile (20/53 aged 18–24) and a near-balanced gender distribution. Most reported a mental health diagnosis (47/53) alongside comorbid physical conditions (38/53).

Regarding data sharing consent (N = 51), the large majority agreed to share data with their treating clinician (45/51) and for research and development purposes (40/51). Of the remaining 11, five opted for sharing with public research institutions only, two with the app developer, and five declined sharing entirely.

Preliminary analysis of the sample that completed the study already (N = 29) showed broadly positive perception of SHC design: usability (4.03/5) and information quality (4.00/5) scored highest; interactivity (3.10/5) and customizability (3.00/5) were moderate. SUS-aligned items confirmed good usability, with low perceived complexity (2.45/5) and minimal need for external assistance (2.17/5). Trust was assessed using TrustDiff , where lower scores on the 7-point scale indicate more favourable appraisals. Ratings were generally positive, particularly for ethical and relational dimensions (respectfulness (M = 2.31), reliability (M = 2.38), trustworthiness (M = 2.45)). Person-centred qualities were comparatively less favourably rated (empathy (M = 3.07), understanding of needs (M = 3.10)).

CONCLUSIONS

High consent rates for primary (88%) and secondary use (78%) suggest psychiatric patients are willing to share app-generated health data through a structured consent interface, extending prior qualitative evidence on data sharing sensitivity in this group [5]. Usability and trust were rated positively, though moderate interactivity and person-centred scores indicate design areas requiring iteration. These findings support the SHC as a feasible consent infrastructure aligned with the European Health Data Space.

References

  1. Dixon, W.G., van der Veer, S.N., Ali, S.M., et al., 2023. Charting a course for smartphones and wearables to transform population health research. J. Med. Internet Res. 25, e42449.
  2. Brückner, S., Sadare, O., Fesl, S., et al., 2025. Attitudes of healthcare professionals and researchers toward wearable and app derived patient generated health data. npj Digit. Med. 8, 186.
  3. Brückner, S., Kirsten, T., Schwarz, P., et al., 2023. The social contract for health and wellness data sharing needs a trusted standardized consent. Mayo Clin. Proc. Digit. Health 1 (4), 527–533.
  4. Brückner, S., Dridi, A., Deshmukh, A., et al., 2025. A user-driven consent platform for health data sharing in digital health applications. npj Digit. Med. 8, 699.
  5. Fesl, S., Lang, C., Verhees, F.G., et al., 2026. Perspectives on health data sharing among patients with somatic and mental health diseases: focus group study. J. Med. Internet Res. 28, e79990. doi:10.2196/79990