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Incorporating Community Partner Perspectives on eHealth Technology Data Sharing Practices for the California Early

Laura M Tully1, Kathleen E Nye1, Sabrina Ereshefsky1

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Summary

Ethical data sharing in early psychosis (EP) care requires user-centered end-user license agreements (EULAs). Transparent EULAs and user control significantly increase data sharing acceptability among clients, providers, and family members.

Keywords:
attitudecontent analysisdata sharingeHealthethicfocus grouphealth information exchangemental healthperspectivepreferencepsychosispsychoticqualitative data

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Area of Science:

  • Digital Health
  • Mental Health Technology
  • Psychosis Research

Background:

  • eHealth technologies are increasingly used for early psychosis (EP) identification and intervention.
  • Ethical data use practices are crucial for user trust and acceptability in digital mental health.
  • User data fuels algorithms for early identification and intervention in EP.

Purpose of the Study:

  • To explore community partner perspectives on ethical data sharing and end-user license agreements (EULAs) in early psychosis (EP) care.
  • To develop a user-centered EULA protocol aligned with community partner priorities.
  • To assess the impact of user-centered EULA design on data sharing willingness.

Main Methods:

  • Qualitative focus group study with EP providers, clients, and family members.
  • Content analysis of transcripts to identify key themes in data sharing preferences.
  • User-centered design workshops to develop a transparent and accessible EULA.

Main Results:

  • Participants are aware of data risks but desire control and transparency.
  • Concerns about data sharing are mitigated by user-level controls and clear, accessible EULAs.
  • A user-centered EULA and opt-in process achieved an 88.1% data sharing agreement rate among clients.

Conclusions:

  • Community partner priorities (clients, family, providers) are consistent regarding data sharing.
  • Incorporating these priorities into EULA development enhances voluntary data sharing.
  • User-centered ethical data practices are key to successful eHealth implementation in mental health.