Involving Service Users in Care Regulation: A Scoping Review of Empirical Literature

Ensuring the quality and safety of service delivery extends beyond the realm of health and care professionals, necessitating collaboration among various stakeholders, including external regulatory organizations. The policy agenda of care regulators increasingly features the topic of service user involvement. Despite the extensive research on participatory healthcare, scholarly attention to service user involvement in regulatory practices has been limited. This scoping review delves into the landscape of service user involvement in the regulation of care services of all types and for all different age groups, examining the characteristics and focus of peer reviewed original research. In particular, it addresses a notable knowledge gap by examining how these studies report on the practical utilization of service user input, as well as the regulator's perspective on service user involvement.

We conducted a literature search in PubMed, Embase, CINAHL, APA PsycInfo, and Scopus from inception to July 14, 2023. Thirteen (n=13) empirical studies were included.

The underlying motives for service user involvement vary, ranging from legal imperatives and political pressure to enhancing institutional legitimacy and regulatory decision-making. Care regulators employ both reactive and proactive involvement methods. Empirical evidence delineates the challenges and benefits of service user involvement, highlighting concerns about bias, time investments, and the need for a distinct skillset for inspectors. Despite the valuable insights gained, there are instances where service user input is downplayed in practice.

The findings underscore the importance of additional research on users' preferences for involvement, optimal communication conditions to honor the collected input, and the challenges inspectors encounter in fostering meaningful involvement with service users. Addressing these challenges is crucial for aligning regulatory efforts with the genuine needs and experiences of services users.