User involvement in planning and policy decision making has become the policy of choice for government as well as health and social care service providers in most democratic countries.1-7 This makes a lot of sense. Indeed, a growing body of research evidence suggests that actively engaging users in the program and policy design process leads to better policy outcomes.5 Yet this transition to a more participatory and collaborative mode of program and policy design has been uneven. In many health and social care programs, public participation is often restricted to the operational level where users can only influence the service mix they receive and user input into program design and policy making is often minimal.4,7-12 This is understandable. The transition to a more participatory mode of program and policy development requires a fundamental shift in professional practice and takes time and sustained effort. Moreover, little guidance is available for those who aspire to a more active involvement of user groups in decision-making processes. The lessons outlined in this paper were designed to provide health and social care professionals with a practical guide for an active and ongoing inclusion of user groups.
Setting, participants and methodology
We derived the following 10 lessons from a longitudinal study conducted between 2003 and 2008. The study gave rise to a Consumer-Directed Care (CDC - see Box 1 for an overview) project for people with disabilities and their carers or families hosted by UnitingCare Community Options (UCCO), a subsidiary of the UnitingCare network, a large provider of aged and social care in Australia. A detailed description of this government- funded project has been published elsewhere.13,14 Because of the limited scope of this paper, only a very cursory summary of the project is given.
The project was constructed in three stages. The predevelopment stage (1) involved the identification of potential participants as well as the development of knowledge and infrastructure elements underpinning the participatory approach. Approximately 20 families caring for a son or daughter with a disability in their homes declared an interest in participating in the project. Eleven families were eligible and decided to take up the option. A gap analysis was undertaken and participants received detailed briefings about a variety of CDC models and approaches. Also, they were given the opportunity to meet with consumers of already established CDC projects. A Project Steering Committee was formed and two participant Working Groups were created to drive the development of policies and procedures as well as to design innovative housing solutions for people with disabilities. The development phase (2) involved the employment of a project officer, the development of policies and procedures, the integration of the project into UCCO's overall operational and administrative infrastructure, the creation of informal support groups, the design of consumer feedback and evaluation processes, and the development of safeguards geared to protect and support participants. During the subsequent iterative, formative development phase (3) the program was fine-tuned and evaluated (3). Fig. 1 provides an overview of the participatory methodology employed. Readers who would like to obtain a detailed description of the methodology, approach, and participants are referred to Ottmann, Laragy, and Damonze.13
Participatory methods in health and social care policy and program design
Community-based health care governance structures have been trialled in various guises since the 1950s.5 Still, until the mid 1990s, projects that draw on the preferences of end users to determine policy options remained confined to the realm of experimentation.4,5,11,12,15-18 More recently, however, policy makers in Europe and North America have embraced consumer choice as a key criterion to make health and social care service more flexible and responsive. …