Background: Increased 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.
Objective: First, 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.
Methods: We 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.
Results: In 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.
Conclusions: Many 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.
Keywords: attitude; content analysis; data sharing; eHealth; ethic; focus group; health information exchange; mental health; perspective; preference; psychosis; psychotic; qualitative data.
©Laura M Tully, Kathleen E Nye, Sabrina Ereshefsky, Valerie L Tryon, Christopher Komei Hakusui, Mark Savill, Tara A Niendam. Originally published in JMIR Human Factors (https://humanfactors.jmir.org), 14.11.2023.