ArticleJMIR human factors2023
Incorporating Community Partner Perspectives on eHealth Technology Data Sharing Practices for the California Early Psychosis Intervention Network: Qualitative Focus Group Study With a User-Centered Design Approach.
Article in JMIR human factors, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
8 citing papers in PubMed, 9 citations in OpenAlex.
- Increasing the Value of Health Intervention Trials: Qualitative Research in the Early Psychosis Intervention Network (EPINET).Community mental health journal · 2025Article
- Co-Designing a Web-Based and Tablet App to Evaluate Clinical Outcomes of Early Psychosis Service Users in a Learning Health Care Network: User-Centered Design Workshop and Pilot Study.JMIR human factors · 2025Article
- Forging a learning health system for early psychosis: Insights from the academic community EPINET.Schizophrenia research · 2025Article
- The Academic Community Early Psychosis Intervention Network: Toward building a novel learning health system across six US states.Learning health systems · 2025Article
- A mixed-methods study exploring the benefits, drawbacks, and utilization of data in care: Findings from the EPI-CAL early psychosis learning health care network.Schizophrenia research · 2025Review
- Putting measurement-based care into action: a multi-method study of the benefits of integrating routine client feedback in coordinated specialty care programs for early psychosis.BMC psychiatry · 2024Article
- The California collaborative network to promote data driven care and improve outcomes in early psychosis (EPI-CAL) project: rationale, background, design and methodology.BMC psychiatry · 2024Article
- Putting measurement-based care into action: A mixed methods study of the benefits of integrating routine client feedback in coordinated specialty care programs for early psychosis.Research square · 2024Article
Corrections and comments
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Authors and funding
7 authors at 2 institutions in 1 country.
Funding
Abstract
backgroundIncreased use of eHealth technology and user data to drive early identification and intervention algorithms in early psychosis (EP) necessitates the implementation of ethical data use practices to increase user acceptability and trust.
objectiveFirst, the study explored EP community partner perspectives on data sharing best practices, including beliefs, attitudes, and preferences for ethical data sharing and how best to present end-user license agreements (EULAs). Second, we present a test case of adopting a user-centered design approach to develop a EULA protocol consistent with community partner perspectives and priorities.
methodsWe conducted an exploratory, qualitative, and focus group-based study exploring mental health data sharing and privacy preferences among individuals involved in delivering or receiving EP care within the California Early Psychosis Intervention Network. Key themes were identified through a content analysis of focus group transcripts. Additionally, we conducted workshops using a user-centered design approach to develop a EULA that addresses participant priorities.
resultsIn total, 24 participants took part in the study (14 EP providers, 6 clients, and 4 family members). Participants reported being receptive to data sharing despite being acutely aware of widespread third-party sharing across digital domains, the risk of breaches, and motives hidden in the legal language of EULAs. Consequently, they reported feeling a loss of control and a lack of protection over their data. Participants indicated these concerns could be mitigated through user-level control for data sharing with third parties and an understandable, transparent EULA, including multiple presentation modalities, text at no more than an eighth-grade reading level, and a clear definition of key terms. These findings were successfully integrated into the development of a EULA and data opt-in process that resulted in 88.1% (421/478) of clients who reviewed the video agreeing to share data.
conclusionsMany of the factors considered pertinent to informing data sharing practices in a mental health setting are consistent among clients, family members, and providers delivering or receiving EP care. These community partners' priorities can be successfully incorporated into developing EULA practices that can lead to high voluntary data sharing rates.
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