JMIR Publications

ABSTRACT

The sustainability of health and social care has led to an increasing policy and practice imperative to shift the balance of care to communities and enable a system that supports person-centred, integrated, preventative, co-managed and sustainable care. The digital health and social care toolset can support this shift however this must extend beyond a clinical focus to include broader personal, social, and environmental needs, experiences, and outcomes. Existing digital health and care design and user requirements literature mainly focuses on either specific digital products or design methods. There is little whole system or whole of life consideration which is crucial to enact more significant transformation that spans different groups and domains. This paper analyses the insights from a large body of co-design research and presents a set of recurring user requirements and themes for co-managed digital health and care services. These requirements look beyond individual technologies and processes specific to one type or domain of care. The findings present a starting point for people and organisations looking to re-orient 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. Through engaging participation of both citizens and care professionals in the underlying design research, the findings also demonstrate overlapping and mutually reinforcing sets of needs from both groups relating to how data is co-managed to improve care and outcomes. The paper discusses the alignment, contrasts, and gaps with broader, comparable literature, highlighting consensus around requirements for personal health storytelling, sharing data on health experiences and how this can support personalised guidance, visualise trends to support decision-making, and generally improve dialogue between a citizen and a care professional (a ‘vertical’ relationship). The findings pose difficult questions for people designing health, social care, and broader support services – because the user requirements are not easily met by organisations operating in silos. The paper proposes future recommendations of the citizen as an active, informed and consenting partner, using new forms of privacy-preserving digital infrastructure that puts the citizen in firm control. It is also recommended that the findings be used by people developing new digital health and care services to ensure they can start with knowledge of the broader user requirement context. It should inform the 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 a citizen is co-managing 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.