JMIR Publications

ABSTRACT

Background:

Combining patient-generated health data and digital health platforms may improve the patient experience and population health, mitigate rising healthcare costs, reduce clinician burnout, and enable health equity. Yet, lack of trust may be a significant barrier to data sharing required to use such platforms. Understanding sociodemographic, health, and personal characteristics will enable developers and implementers of such technologies to consider these in their technical design requirements.

Objective:

To understand the relationship between socio-demographic characteristics of caregivers of children or adolescents and trust in and willingness to use digital platforms to store and share personal health information for clinical care and research.

Methods:

This study used a mixed-methods approach, including a) surveys of caregivers of youth under 18 years of age living in Canada or the United States and youth aged 16-17 years living in Canada and b) online bulletin board discussion groups to further explore topics of trust in data sharing. Sociodemographic and trust survey data were tabulated and explored using proportional odds ordinal regression models. Comments from online group discussions were analyzed thematically using a coding approach to identify issues important to the participants.

Results:

Survey data from 1,128 caregivers (49% female, 59% aged 36-50, 54% Canadian-based, 44% urban populations), of which 685 completed all questions, and 173 youth (42% female, 100% Canadian-based, 54% urban), of which 129 completed all questions, were available for analysis; 23 caregivers further contributed to the online discussion boards. Related to trust, living in a rural area (vs. urban; odds ratio (OR) 0.66, 95% confidence interval (CI) 0.46, 0.95)) resulted in lower concern for data privacy and security while having an undergraduate (OR 1.82, 95% CI 1.30,2.55) or graduate degree (OR 2.50, 95% CI 1.68, 3.73) (vs. secondary or trade school) resulted in a higher level of concern. Also, living with a chronic disease (OR 1.81, 95% CI 1.35, 2.44) increased the level of concern regarding data privacy and security. Interestingly, those with chronic disease were more willing to use a digital platform for clinical care and share their personal health information for not-for-profit research. Caregivers were most concerned about data breaches involving data from their children but also highlighted that digital platforms would allow for better coordination of care for their children.

Conclusions:

Our research confirms the willingness of caregivers and youth to use digital platforms for both clinical care delivery and research and suggests that the value of a digital platform may outweigh the risk of its use. Engagement of end-users in co-designing such platforms has the potential to enhance digital trust and guide development by providing insights into requirements for access controls, authorizations, device integration and user experience for a ‘digital front door’ to such a platform.