Barriers to and Facilitators of Participation in Health and Social Care Governance: Categories and Cross-Cutting Themes from a Survey of SHAPES Project Partners.

Abstract

Good governance-aligned with human rights and rights-based care, participation, inclusion, and person-centredness-of digital care systems is integral to their ability to meet their objectives. To gain insight into existing governance structures and processes and participation experiences across Europe and lay foundations for the SHAPES Project's network governance (a healthy and active ageing Innovation Action consortium), our objectives included: 1) expand the list of known stakeholders, 2) explore how the range of stakeholders participate in health and social care governance, 3) develop an inventory of barriers and facilitators. Using an empirical, survey method, we consulted SHAPES Project partner organisations, with respondents invited to suggest specific participation barriers and facilitators. 16 organisations responded. Numerous additional stakeholders were identified. Circa 150 unique barriers and facilitators were reported, rationalised into 20 superordinate categories. Six cross-cutting themes were assembled: dimensionality and flux; power; opportunity and environments; interest, motivation, and choice; valuing governance participation, and duality. This work allows consideration of a wide range of stakeholders for the SHAPES collaborative governance model and future research, and for system design with the benefit of a detailed inventory of barriers and facilitators, and thematic contextualisation. Participation is modifiable and we suggest intervention targets and mechanisms.