JMIR Publications

ABSTRACT

Background:

Increased use of eHealth technology and user data to drive early identification and intervention algorithms in early psychosis necessitate implementation of ethical data use practices to increase user acceptability and trust.

Objective:

Explore 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 (EULA).

Methods:

We conducted exploratory, qualitative, focus-group-based study design and content analysis assessing mental health data-sharing and privacy preferences. Data was gathered for the California Early Psychosis Intervention (EPI-CAL) network project in 2020-2021. Focus groups were conducted via video conferencing and assessed three EP groups: clinical staff/providers (n=14), clients (n=6), and family members (n=4). Eligible participants were affiliated with one of 18 EPI-CAL network clinics (i.e., convenience sampling), English-speaking, and able to provide written informed consent and assent (minors). Clinic staff/providers were invited from EPI-CAL clinics. Thirty clients and family members were invited through referral; 20 did not participate. Key themes identified via content analysis of focus group discussions.

Results:

Clinical staff participants (N = 14) were adults (M = 37.9, SD = 9.0), predominantly cisgender female (71%), White (64%), and non-Hispanic (64%). Clients (N = 6) were young adults (M = 23.8, SD = 3.9), predominantly male sex (67%) and non-Hispanic (83%), with no predominant race or gender identity. Family (N = 4) were middle-aged (M = 47.5, SD = 7.8), mostly cisgender female (75%), non-Hispanic (100%), with no predominant race. Participants were acutely aware of widespread third-party sharing across digital domains, risk of breaches, and motives hidden in legal language of EULAs. Consequently, they reported feeling loss of control and lack of protection over their data. These concerns can be mitigated via user-level control for data sharing with third parties and an understandable, transparent EULA including multiple presentation modalities, text at an 8th grade reading level, and clear definition of key terms.

Conclusions:

Transparent EULAs with user-level control of data sharing are desired by consumers using eHealth technology and result in high data-sharing rates. EULAs designed in a manner consistent with EP consumers' preferences facilitates increased engagement in eHealth technology.