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

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.

Everyday and unavoidable coproduction: exploring patient participation in the delivery of healthcare services.

The financial and capacity pressures facing healthcare systems call for new strategies to deliver high-quality, efficient services. 'Coproduction' is a concept gaining recognition as an approach to create patient partnerships that enable better functioning healthcare systems. Yet, this framing obscures coproduction's 'everyday and unavoidable' character, already part of healthcare service delivery. This paper aims to understand these everyday and unavoidable dimensions of coproduced healthcare services by drawing upon thematic and process analyses of a 15-month ethnography of 45 patients in three HIV clinics in New York. A 'health practices' approach guided exploring patients' activities, their effects on clinical processes, and the conditions surrounding their performances. By constructing a typology of activity types - Building, Accepting, and Objecting - and tracing patients' descriptions of activity performances, the paper shows how coproduction is forged by making and relying upon clinic-based relationships, and for patients also with a broader human community. These dynamics reveal how patients' bodily and temporal understandings are brought into and shape coproduced services. From these insights, we recommend that healthcare practitioners incorporate into their coproduction analytic methods and perspectives to engage patients as capable and aware individuals, who can support clinic efficiencies while producing new delivery possibilities.

The Impact of Comprehensive Case Management on HIV Client Outcomes.

In 1990, New York State instituted Comprehensive Medicaid Case Management, also known as Target Case Management (TCM), for people dealing with multiple comorbid conditions, including HIV. The goal of TCM is to assist clients in navigating the health care system to increase care engagement and treatment adherence for individuals with complex needs. HIV-positive individuals engaged in care are more likely to be virally suppressed, improving clinical outcomes and decreasing chances of HIV transmission. The purpose of this study was to understand the impact of TCM management on outcomes for people with HIV. Data were obtained from Amida Care, which operates not-for-profit managed care Medicaid and Medicare Special Needs Plans (SNPs) for HIV clients. Changes in clinical, cost, as well as medical and pharmacy utilization data among TCM clients were examined between January 2011 through September 2012 from the start of case management enrollment through the end of the study period (i.e., up to 6 months after disenrollment). Additionally, CD4 counts were compared between Amida Care TCM clients and non-TCM clients. Notable findings include increased CD4 counts for TCM clients over the one-year study period, achieving parity with non-TCM clients (i.e., Mean CD4 count > 500). When looking exclusively at TCM clients, there were increases in medication costs over time, which were concomitant with increased care engagement. Current findings demonstrate that TCM is able to achieve its goals of improving care engagement and treatment adherence. Subsequent policy changes resulting from the Affordable Care Act and the New York State Medicaid Redesign have made the Health Home the administrator of TCM services. Government entities charged with securing and managing TCM and care coordination for people with HIV should provide thoughtful and reasonable guidance and oversight in order to maintain optimal clinical outcomes for TCM clients and reduce the transmission of HIV.

Health Care User Perspectives on Constructing, Contextualizing, and Co-Producing "Quality of Care".

Most of the research on health care user "quality of care" perspectives seeks discrete and measurable indicators to advance quality improvement (QI) goals. This lacks sufficiently grounded query about the meaning of "quality of care" for health users, and how context influences their ideas and experiences. We studied this between 2010 and 2011, repeatedly interviewing and shadowing 45 individuals in three of New York's hospital-based outpatient HIV care settings during routine visits. We found participants using common terminology, but across the cohort meaning varied and employed personal narratives. Participants conveyed the impact of historic and current experiences of stigma and discrimination on limiting access to care, and showed its destabilizing effects on quality constructs. Participants also felt they contributed to their health care settings' delivery of quality care. From our findings, we discuss the applicability and implications of "co-production" to conceptualize health care as jointly delivered by typical "givers" and "receivers" of care.