Caregiver and Youth Characteristics That Influence Trust in Digital Health Platforms in Pediatric Care: Mixed Methods Study
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Abstract
Background: Combining patient-generated health data and digital health platforms may improve patient experience and population health, mitigate rising health care costs, reduce clinician burnout, and enable health equity. However, lack of trust may be a notable barrier to the data-sharing required by 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: This study aims to understand relationships between sociodemographic 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 surveys of caregivers of youth aged <18 years living in Canada or the United States and youth aged 16 to 17 years living in Canada, as well as web-based bulletin board discussions to further explore topics of trust in data sharing. Sociodemographic and survey data were tabulated and explored using proportional odds ordinal regression models. Comments from web-based group discussions were analyzed thematically using a coding approach to identify issues important to the participants. Results: Survey data from 1128 caregivers (female participants: n=549, 48.7%; 36-50 years old: n=660, 58.5%; Canadian: n=603, 53.5%; urban population: n=494, 43.8%) were collected, of which 685 (60.7%) completed all questions. Data from 173 youth (female participants: n=73, 42.2%; urban population: n=94, 54.3%) were collected, of which 129 (74.6%) completed all questions, and data were available for analysis. Furthermore, among 40 participants, 23 (58%) caregivers contributed to the web-based discussion boards. Related to trust, living in a rural area (vs urban; odds ratio [OR] 0.66, 95% 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 (vs secondary or trade school; OR 2.50, 95% CI 1.68-3.73) resulted in higher levels of concern. Living with a chronic disease (OR 1.81, 95% CI 1.35-2.44) increased levels of concern regarding data privacy and security. Interestingly, those with chronic disease were more willing to use digital platforms for clinical care and share 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 risks of its use. Engagement of end users in co-designing such platforms has the potential to enhance digital trust. However, digital trust varies across sociodemographic groups; therefore, diverse end user engagement is necessary when designing digital applications.
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The design and development of the platform were guided by extensive formative research, including multiple rounds of usability testing with end-users.
“The design and development of the platform were guided by extensive formative research [31,33], including multiple rounds of usability testing (manuscripts in preparation) with end-users (i.e., patients and caregivers living with T1D and their HCP).”
From Caregiver experiences of an integrative patient-centered digital health application for pediatric type 1 diabetes care: Findings from a pilot clinical trial (2025) · cites this paper as [31]
The Discussion (Conclusions and Future Directions; page unavailable) says this study’s caregiver and youth findings will inform the prioritization of TrustSphere’s features and its iterative co-design. The Methods (Data Collection; page unavailable) describe surveys and a discussion board, but the paper does not report multiple rounds of usability testing. The citing sentence attributes that testing to manuscripts in preparation, not specifically to this source. (LLM, conf=0.86)
Experimental — accuracy not yet measuredThe platform was developed using user-centered and participatory design approaches with multiple rounds of iterative user feedback.
“It was developed following a survey conducted with parents and youth (ages 16–17 years) to gain insight into their perspectives on digital trust [31] and to apply user-centered and participatory design approaches during the platform’s development, incorporating multiple rounds of iterative user feedback [32–34].”
From Caregiver experiences of an integrative patient-centered digital health application for pediatric type 1 diabetes care: Findings from a pilot clinical trial (2025) · cites this paper as [31]
The collaboration with end users throughout the platform development process likely contributed to users reporting high usefulness and acceptable usability.
“Our collaboration with end users throughout the platform development process [31,33] likely contributed to users reporting high usefulness and acceptable usability, as this co-creation approach has been recognized as essential for successful digital health technology development [36,37].”
From Caregiver experiences of an integrative patient-centered digital health application for pediatric type 1 diabetes care: Findings from a pilot clinical trial (2025) · cites this paper as [31]
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- Authors
- Chow, E., Virani, A., Pinkney, S., Abdulhussein, F. S., van Rooij, T., Görges, M., Wasserman, W., Bone, J., Longstaff, H., & Amed, S.
- Affiliations
- University of British Columbia (CA)
- BC Children's Hospital Research Institute (CA)
- BC Children's Hospital (CA)
- Provincial Health Services Authority (CA)
- Corresponding author
- Amed, Shazhan
- ORCID
- Venue
- Journal of Medical Internet Research
- Publisher
- JMIR Publications Inc.
- Published
- 2024-10-28
- Volume
- 26
- Pages
- e53657
- ISSN
- 1438-8871 (ISSN-L)
- PMC
- PMC11555442
- OpenAlex
- W4403817026
- Cited by
- 12
- References
- 39
- Citations by year
- 2026: 4 · 2025: 7 · 2024: 1
- FWCI
- 3.66
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- cc-by
- Locations
- Journal of Medical Internet Research (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Funders
- Children's Hospital Foundation
- BC Children's Hospital
- Michael Smith Health Research BC
- Topics
- Health Sciences › Health Professions › Health Information Management › Electronic Health Records Systems
- Health Sciences › Health Professions › General Health Professions › Mobile Health and mHealth Applications
- Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
- Keywords
- pediatric care, caregivers, adolescents, youth, patient-generated health data, health data sharing, data privacy and security, sociodemographic factors, urban-rural differences, chronic disease, health literacy, health equity, health information technology adoption, research data sharing, clinician burnout, health care costs, patient experience
- MeSH terms
- Digital Health, Adolescent, Adult, Canada, Child, Female, Humans, Male, Middle Aged, Pediatrics, Surveys and Questionnaires, United States, Caregivers, Information Dissemination, Trust
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