Research Alert

Background: The sustainability of health and social care has led to an imperative to shift the balance of care to communities and support person-centered, integrated, preventive, comanaged, and sustainable care. The digital tool set can support this shift; however, it must extend beyond a clinical focus to include broader personal, social, and environmental needs, experiences, and outcomes. The existing digital health and care design and user requirements literature focuses mainly on specific digital products or design methods. There is little whole-system or whole-of-life consideration, which is crucial to enacting more significant transformations that span different groups and domains.

Objective: This study aimed to present a set of recurring user requirements and themes for comanaged digital health and care services derived from the body of co-design projects within a digital health and care program. This study aimed to enable people and organizations looking to reorient their approach to health and care research and delivery from a system-led and condition-specific approach to a more person-centric, whole-of-life model.

Methods: Participatory design formed the core methodological approach in underlying the design research, from which user requirements were derived. The process of surfacing requirements involved a selection framework for the identification of eligible projects and a structured review process to consolidate user requirements.

Results: This paper presents a set of 14 common user requirements that resulted from a review of co-design projects. The findings demonstrate overlapping and reinforcing sets of needs from citizens and care professionals related to how data are comanaged to improve care and outcomes. This paper discusses the alignment, contrasts, and gaps with broader, comparable literature. It highlights consensus around requirements for personal health storytelling, sharing data on care experiences and how this can support personalized guidance, visualize trends to support decision-making, and generally improve dialog between a citizen and care professionals. These findings identify gaps around how groups and networks of people engage, posing difficult questions for people designing support services as some of the user requirements are not easily met by organizations operating in silos.

Conclusions: This study proposes future recommendations for citizens as active, informed, and consenting partners using new forms of privacy-preserving digital infrastructure that puts the citizen in firm control. It is also recommended that these findings be used by people developing new digital services to ensure that they can start with knowledge of the broader user requirement context. This should inform domain-specific research and development questions and processes. Further work is needed to extend these common requirements to more explicitly consider the trust framework required when citizens comanage their data and care across a broad range of formal and informal actors. Consideration of how authority, delegation, and trust function between members of the public will be critical.

Journal Link: Journal of Medical Internet Research

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Journal of Medical Internet Research