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.