Developing consumer-directed care for people with a disability: 10 lessons for user participation in health and community care policy and program development

Abstract

This paper outlines 10 lessons derived from the development of a consumer-directed care program for families with disabled children in Melbourne, Australia. The following program elements proved to be of importance over the course of the development process: (1) research participants should be involved as early as possible; (2) an open, inclusive communication style in conjunction with a good understanding of potential concerns and a careful framing of the policy issue is required to build trust and allow meaningful collaboration; (3) various strands of evidence have to be woven together; (4) ongoing commitment and support from management and key stakeholders; (5) effective knowledge transfer and cultural change processes; (6) capacity building; (7) mediation of power differentials; (8) community building; (9) participant re-engagement strategies; and (10) solid project management skills. What is known about the topic? User involvement in planning and decision making has become the policy of choice for government as well as health and social care service providers in most democratic countries. However, there are few examples highlighting key factors for successful user involvement. What does this paper add? Based on a longitudinal review of a program developed with significant user involvement, this paper outlines 10 key requirements underpinning participatory strategies for project and policy design. What are the implications for practitioners? Participatory methodologies are potentially complex, have to be meticulously planned and resourced, and have to be carefully managed. To meaningfully involve users in more intricate projects may require the input of experienced professionals.