Evolution of Regional Information Infrastructures Integrating Health and Social Care in Scotland: Qualitative Study.

Abstract

Expectations of integrating health and social care providers have driven the development of digital solutions aimed at overcoming interoperability challenges and ensuring access to information needed for integrated care across fragmented services. However, challenges persist in aligning diverse coding practices, heterogeneous data-sharing mechanisms, and stakeholder needs. We examine how expectations of interoperability and integrated care have shaped the growth of regional information infrastructures in Scotland, using the Key Information Summary (KIS), a summary record that shares key patient information from general practitioner records with out-of-hour services, ambulance services, hospitals, social workers, and caregivers across multiple care settings, as a case study. This qualitative study examined the development, implementation, and adoption of KIS in Lothian, Scotland, across health and care settings, where it has been in use for 13 years. Multisited ethnography was used to understand how technology design, implementation, and adoption were shaped by social, organizational, cultural, and political factors. Data were collected through interviews with users, vendors, and implementers; observations of technology use and multidisciplinary team meetings; and documentary analysis of policies, user guides, and internal reports. A hybrid analytical approach was applied: the Technology, People, Organization, and Macroenvironment framework guided initial coding, while the sociology of expectations and information infrastructure theory were used inductively to trace evolving visions of integration, and the long-term development of regional information infrastructure. Data included 54 qualitative interviews, 20 hours of observation, and 59 documents collected between April 2024 and March 2025. Findings illustrate how information infrastructures for integrating health and care providers evolved through successive concerted efforts, conceptualized as waves. Three waves were identified, each characterized by attempts to interlink disparate information systems used by various health and care providers. The first wave focused on linking health care providers by developing networks and architectures required for sharing clinical information, which later supported the development and sharing of KIS. Subsequent waves sought to interlink information systems used by health care providers with those used by local authorities and social care providers. In the absence of shared data standards across these sectors, interoperability was achieved by extending the existing health care-centric infrastructure to different social care settings through workarounds such as providing proxy access to hospital systems and secure emailing networks. This work illustrates how regional information infrastructures for integrated care evolve through orchestrated waves of change. Some expectations for change required coordinated, system-level action, such as setting up standards, networks, and architecture, while others were realized through local adaptations. Integrating health and care providers through digitalization is a long-term process requiring sustained coordination, with progress often occurring through incremental, local extensions. Policies must support adaptive, long-term coordination, balancing system-level initiatives with local adaptations to achieve meaningful integration.