Beyond tokenism in quality management policy and programming: moving from participation to meaningful involvement of people with HIV in New York State

Abstract Background Consumer involvement in health-care policy and quality management (QM) programming is a key element in making health systems people-centered. Involvement of health-care consumers in these areas, however, remains underdeveloped and under-prioritized. When consumer involvement is actively realized, few mechanisms for assessing its impact have been developed. The New York State Department of Health (NYSDOH) embraces consumer involvement of people with HIV in QM as a guiding principle, informed by early HIV/AIDS advocacy and a framework of people-centered quality care. Method HIV consumer involvement is implemented statewide and informs all quality of care programming as a standard for QM in health-care organizations, implemented through four key several initiatives: (i) a statewide HIV Consumer Quality Advisory Committee; (ii) leadership and QM trainings for consumers; (iii) specific tools and activities to engage consumers in QM activities at state, regional and health-care facility levels and (iv) formal organizational assessments of consumer involvement in health-care facility QM programs. Results We review the literature on this topic and place the methods used by the NYSDOH within a theoretical framework for consumer involvement. Conclusion We present a model that offers a paradigm for practical implementation of routine consumer involvement in QM programs that can be replicated in other health-care settings, both disease-specific and general, reflecting the priority of active participation of consumers in QM activities at all levels of the health system.