Designing a Collaborative Patient-Centered Digital Health Platform for Pediatric Diabetes Care in British Columbia: Formative Needs Assessment by Caregivers of Children and Youths Living With Type 1 Diabetes and Health Care Providers
Open accessPublished version of a preprint
Abstract
Background: Digital health apps are becoming increasingly available for people living with diabetes, yet data silos continue to exist. This requires health care providers (HCPs) and patients to use multiple digital platforms to access health data. Objective: In this study, we gathered the perspectives of caregivers of children and youths living with type 1 diabetes (T1D) and pediatric diabetes HCPs in the user-centered design of TrustSphere, a secure, single-point-of-access, integrative digital health platform. Methods: We distributed web-based surveys to caregivers of children and youths living with T1D and pediatric diabetes HCPs in British Columbia, Canada. Surveys were designed using ordinal scales and had free-text questions. Survey items assessed key challenges, perceptions about digital trust and security, and potential desirable features for a digital diabetes platform. Results: Similar challenges were identified between caregivers of children and youths living with T1D (n=99) and HCPs (n=49), including access to mental health support, integration of diabetes technology and device data, and the ability to collaborate on care plans with their diabetes team. Caregivers and HCPs identified potential features that directly addressed their challenges, such as more accessible diabetes data and diabetes care plans. Caregivers had more trust in sharing their child’s data digitally than HCPs. Most caregivers and HCPs stated that an integrative platform for T1D would support collaborative patient care. Conclusions: Caregiver and HCP perspectives gathered in this study will inform the early prototype of an integrative digital health platform. This prototype will be presented and iterated upon through a series of usability testing sessions with caregivers and HCPs to ensure the platform meets end users’ needs.
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Integrity signals
Registry
Cites
Statistics
Claims the paper makes
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
The 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 [33]
The Discussion (Strengths and Limitations) says caregivers and health care providers were involved early in the platform’s user-centered design. It describes multiple rounds of prototype usability testing and feedback as forthcoming, not as rounds already completed; the Conclusions likewise describe participatory design as an ongoing opportunity. (LLM, conf=0.88)
Experimental — accuracy not yet measuredThe 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 [33]
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 [33]
Self-check
Percentages, sums and reported differences re-computed from the paper’s own numbers.
The self-check needs the paper’s full text.
Cites
Harris, P. A., Taylor, R., Thielke, R., Payne, J., Gonzalez, N., & Conde, J. G. (2009) · Journal of Biomedical Informatics · doi:10.1016/j.jbi.2008.08.010 · Cited by 51,384 · see citing works
Disparities in Health Care and the Digital Divide
Saeed, S. A., & Masters, R. M. (2021) · Current Psychiatry Reports · doi:10.1007/s11920-021-01274-4 · Cited by 578 · cited 1× · see citing works
“Also, improving literacy can involve distributing educational materials in languages other than English, so patients and their families can better understand and interpret the information provided by digital apps [26].”
Arnhold, M., Quade, M., & Kirch, W. (2014) · Journal of Medical Internet Research · doi:10.2196/jmir.2968 · Cited by 417 · see citing works
Acceptance and Resistance of New Digital Technologies in Medicine: Qualitative Study
Safi, S., Thiessen, T., & Schmailzl, K. J. (2018) · JMIR Research Protocols · doi:10.2196/11072 · Cited by 346 · see citing works
Fleming, G. A., Petrie, J. R., Bergenstal, R. M., Holl, R. W., Peters, A. L., & Heinemann, L. (2020) · Diabetes Care · doi:10.2337/dci19-0062 · Cited by 306 · see citing works
Addala, A., Auzanneau, M., Miller, K., Maier, W., Foster, N., Kapellen, T., Walker, A., Rosenbauer, J., Maahs, D. M., & Holl, R. W. (2021) · Diabetes Care · doi:10.2337/dc20-0257 · Cited by 283 · see citing works
Whitelaw, S., Pellegrini, D. M., Mamas, M. A., Cowie, M., & Van Spall, H. G. C. (2021) · European Heart Journal - Digital Health · doi:10.1093/ehjdh/ztab005 · Cited by 241 · see citing works
Jeffrey, B., Bagala, M., Creighton, A., Leavey, T., Nicholls, S., Wood, C., Longman, J., Barker, J., & Pit, S. (2019) · Diabetology & Metabolic Syndrome · doi:10.1186/s13098-019-0480-4 · Cited by 212 · see citing works
Gong, E., Baptista, S., Russell, A., Scuffham, P., Riddell, M., Speight, J., Bird, D., Williams, E., Lotfaliany, M., & Oldenburg, B. (2020) · Journal of Medical Internet Research · doi:10.2196/20322 · Cited by 159 · see citing works
The Limitations of User-and Human-Centered Design in an eHealth Context and How to Move Beyond Them
van Velsen, L., Ludden, G., & Grünloh, C. (2022) · Journal of Medical Internet Research · doi:10.2196/37341 · Cited by 139 · see citing works
Type 1 Diabetes in Children and Adolescents
Wherrett, D. K., Huot, C., Mitchell, B. D., & Pacaud, D. (2013) · Canadian Journal of Diabetes · doi:10.1016/j.jcjd.2013.01.042 · Cited by 113 · see citing works
Zhang, Y., Li, X., Luo, S., Liu, C., Xie, Y., Guo, J., Liu, F., & Zhou, Z. (2019) · JMIR mhealth and uhealth · doi:10.2196/12658 · Cited by 109 · see citing works
User‐centered design for technology‐enabled services for eating disorders
Graham, A. K., Wildes, J. E., Reddy, M. C., Munson, S. A., Taylor, C. B., & Mohr, D. C. (2019) · International Journal of Eating Disorders · doi:10.1002/eat.23130 · Cited by 103 · see citing works
Type 1 Diabetes in Children and Adolescents
Wherrett, D. K., Ho, J., Huot, C., Legault, L., Nakhla, M. M., & Rosolowsky, E. T. (2018) · Canadian Journal of Diabetes · doi:10.1016/j.jcjd.2017.10.036 · Cited by 88 · see citing works
Adu, M. D., Malabu, U. H., Malau‐Aduli, A. E. O., & Malau‐Aduli, B. S. (2018) · PLoS ONE · doi:10.1371/journal.pone.0208942 · Cited by 76 · see citing works
Holtz, B., Murray, K. M. E., Hershey, D. S., Dunneback, J. K., Cotten, S. R., Holmstrom, A. J., Vyas, A. K., Kaiser, M. K., & Wood, M. A. (2017) · JMIR mhealth and uhealth · doi:10.2196/mhealth.6654 · Cited by 69 · see citing works
Neinstein, A., Wong, J., Look, H., Arbiter, B., Quirk, K., McCanne, S., Sun, Y., Blum, M., & Adi, S. (2016) · Journal of the American Medical Informatics Association · doi:10.1093/jamia/ocv104 · Cited by 66 · see citing works
Diabetes Self-management Apps: Systematic Review of Adoption Determinants and Future Research Agenda
Alaslawi, H., Berrou, I., Hamid, A. A., Alhuwail, D., & Aslanpour, Z. (2022) · JMIR Diabetes · doi:10.2196/28153 · Cited by 58 · see citing works
Larbi, D., Randine, P., Årsand, E., Antypas, K., Bradway, M., & Gabarrón, E. (2020) · Journal of Medical Internet Research · doi:10.2196/18480 · Cited by 52 · see citing works
Kruzan, K. P., Meyerhoff, J., Biernesser, C. L., Goldstein, T. R., Reddy, M. C., & Mohr, D. C. (2021) · JMIR Mental Health · doi:10.2196/31367 · Cited by 30 · see citing works
Grady, M., Katz, L. B., Cameron, H., & Levy, B. L. (2017) · JMIR Diabetes · doi:10.2196/diabetes.7454 · Cited by 29 · see citing works
Use of Diabetes Technology in Children
Desrochers, H. R., Schultz, A. T., & Laffel, L. M. (2020) · Endocrinology and Metabolism Clinics of North America · doi:10.1016/j.ecl.2019.11.001 · Cited by 29 · see citing works
Fu, H. N. C., Wyman, J. F., Peden-McAlpine, C. J., Draucker, C. B., Schleyer, T., & Adam, T. J. (2023) · JMIR Diabetes · doi:10.2196/38592 · Cited by 15 · see citing works
Digital Health: The Promise and Peril
Superina, S., Malik, A., Moayedi, Y., et al. (2021) · Canadian Journal of Cardiology · doi:10.1016/j.cjca.2021.09.033 · Cited by 15 · see citing works
Flagged first, then by citations
Cited by
Sorted by citations
Amed, S., Pinkney, S., Abdulhussein, F. S., Virani, A., Zachariuk, C., Tamana, S. K., Muralidharan, S., Görges, M., Barrett, B., van Rooij, T., et al. (2025) · PLOS Digital Health · doi:10.1371/journal.pdig.0000861 · Cited by 1 · see citing works
“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).”
Self-citation
- Authors
- Abdulhussein, F. S., Pinkney, S., Görges, M., van Rooij, T., & Amed, S.
- Affiliations
- University of British Columbia (CA)
- BC Children's Hospital Research Institute (CA)
- Corresponding author
- Amed, Shazhan
- Venue
- JMIR Pediatrics and Parenting
- Publisher
- JMIR Publications Inc.
- Published
- 2023-07-13
- Volume
- 6
- Pages
- e46432
- ISSN
- 2561-6722 (ISSN-L)
- PMC
- PMC10375277
- OpenAlex
- W4380372139
- Cited by
- 10
- References
- 24
- Citations by year
- 2026: 3 · 2025: 3 · 2024: 4
- FWCI
- 3.54
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- cc-by
- Locations
- JMIR Pediatrics and Parenting (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Funders
- Breakthrough T1D Canada (4-SRA-2023-1383-S-N)
- Topics
- Health Sciences › Health Professions › General Health Professions › Mobile Health and mHealth Applications
- Health Sciences › Medicine › Endocrinology, Diabetes and Metabolism › Diabetes Management and Education
- Health Sciences › Medicine › Endocrinology, Diabetes and Metabolism › Diabetes Management and Research
- Keywords
- type 1 diabetes, pediatric diabetes, digital health platforms, caregiver perspectives, healthcare provider perspectives, user-centered design, data integration, diabetes technology, mental health support, data security, collaborative care, British Columbia
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
Are you an author, or do you see a problem with this page? Request a review
