Abstract
Background: Formal health care systems alone are insufficient to address patients needs for overall health and wellness over the life course. Over 90% of the care people receive is informal. Gaps of most concern include practical support, self-care, social relationships, and activities. Therefore, to scale solutions at a population level, there is a need to understand key features that support integrating informal and formal care across social, mental, and physical health domains over a life course to achieve highest impact and value.The objective of the research was to identify the key scalable and generalizable features of programs that integrate informal with formal care, to inform a conceptual model of a people-integrated care system.
Approach: We analyzed 4 programs involving informal and community care with and without integration with formal health care. Programs were selected based on intersectoral and multi-level involvement, representation of different governance characteristics, and funding options. We used an adapted integrated care framework as a guide and examined the structures, processes, governance, leadership, populations served, social and health issues addressed, alliances and assets established, implementation, effectiveness, and return on investment. Our stakeholder group of academic researchers, agencies, knowledge users, healthcare providers, and policy strategists was engaged in deriving a taxonomy of key leadership and program features.
Results: The analysis identified five categories of program leadership and governance: Health Sector Lead; Community and Health Sector Co-Lead; Collaborative Lead Agency (network models); Community Lead; Person-directed (lead agency flexible). Key generalizable features for scaling a system-wide solution of informal and formal care identified were: . Coordination by backbone organization 2. Support to individuals to build personalized care networks, integrating physical, mental and social 3. Navigation and connection roles (trained volunteers, paid connectors) to bridge formal and informal care provision 4. Mobilize communities and users to co-design and creatively develop additional informal and social resources to reduce unmet needs, informed by data 5. Option for virtual delivery to reach more people at lower cost 6. Enabling environments including primary care leadership, health and social service coordination; supportive built and social environments; culture shift 7. Building learning systems to grow, transform and improve the quality and impact of efforts There was no standard approach or common outcomes among the programs. Overall, programs demonstrated that community and informal care models have the potential to improve population health and reduce health resource utilization. It is possible to train citizens (e.g. volunteers) to address a spectrum of need, including integrating roles with formal health care to support complex patients. While information on the return on investment was not available for most programs, being untethered from but complimentary to health services can likely lower implementation costs and improve accessibility.
Implications: The research identified key governance, leadership, alliances and asset approaches, and implementation components that build capacity for informal care and community networks as part of health and social care programs. Implementation features for scaling a people-integrated care model emerged that centre formal and informal care across social, mental and physical health domains over a life course.