Indicators and Implementation Guidance to Advance Value-Based HIV Care Through People-Centered Metrics

INTRODUCTION

In 2022, the U.S. President’s Emergency Plan for AIDS Relief shifted to a “person-centered” or “people-centered” orientation.¹ Designed to align with the Joint United Nations Programme on HIV/AIDS (UNAIDS) Global AIDS Strategy’s operating principles, the language change from “client-centered” recognizes individuals’ holistic selves—not only as persons living with HIV in need of diagnosis and treatment but also as people with unique and dynamic needs, preferences, and rights who deserve an individualized service experience tailored to their life journey.

The call for a “people-centered” approach has also been expressed through advocacy in the HIV community for a fourth goal—beyond the original 95-95-95 UNAIDS fast-track targets—to achieve and sustain epidemic control. UNAIDS’ 2025 target of linking at least 90% of people living with HIV and people at risk to people-centered and context-specific integrated services demonstrates the success of this advocacy in elevating people-centered outcomes that have not been previously measured in a standardized way in HIV programs, specifically health-related quality of life.² By drawing inspiration from the value-based care movement, metrics to advance progress toward this 90% goal can be an outcome and an enabler of the UNAIDS’ revised 2025 top-line targets.³ By defining the “numerator” of value, HIV programs can apply the metrics to measure and incentivize the outcomes that advance an individual’s quality of life and care experience.

Quality-of-clinical care metrics have evolved with a similar focus on people-centeredness and measuring client experience of care.^4,5 Recent emphasis on quality of clinical care extends this concept to integration of services and responsiveness to clients’ needs, in addition to safety, effectiveness, efficiency, equitability, and timeliness of clinical care. Measurement of people-centeredness is based on clients’ reported experience of care with respect to effective communication, which is bidirectional between client and care provider; respect and dignity, which encompasses privacy, nondiscrimination, autonomy, confidentiality, and kindness; and emotional support, which includes social support.⁶ People-centered metrics aim to measure what matters to the person as a whole in and outside of the clinical setting, which is key for improving quality of care as well as for setting health system policy priorities.^7,8 People-centered metrics can provide a blueprint for how health services and incentives can be designed to provide high-quality care that is responsive to clients’ needs (i.e., keeping in mind how they affect convenience, access, usability, and motivation for clients and providers).

People-centered metrics can also motivate improved linkages between clinic and community-based services (e.g., by demonstrating how increased access to wrap-around HIV support services, such as economic livelihood strengthening, can improve clinical outcomes). Initiatives to show the utility of people-centered metrics in HIV programming exist across a range of HIV technical areas.^9–11

DEFINING PEOPLE-CENTERED OUTCOMES AND CORRESPONDING METRICS

A validated, streamlined set of metrics can help the HIV community drive toward such a “people-centered” orientation. To define these metrics, the U.S. Agency for International Development (USAID) and its partners Leapfrog to Value and Data for Implementation used a 3-phase approach. First, a conceptual framework for value-based care and the drivers of people-centered outcomes was developed through a consultative process of reviewing and discussing innovative approaches with organizations that are integrating value-based care in HIV programming. Table 1 summarizes 8 case studies that illustrate the critical building blocks of value-based HIV care, based on a review of 27 innovator organizations and innovations drawn from over 300 identified across 7 databases, secondary research, and expert recommendations.¹² Second, the framework was used to identify people-centered outcomes and implementation considerations through individual and focus group discussions with 45 subject matter experts (representing 64% female and 36% male members of global and national PLHIV Community Advisory Boards, global and sub-Saharan African HIV and health system experts, and academics and monitoring and evaluation specialists). Finally, the outcomes and considerations were translated into a set of metrics, indicator reference sheets,² and implementation considerations¹³ (Table 2).^5,8 Ali et al.¹⁴ and Leapfrog to Value¹² provide additional details on the indicator development process. If improvements in these outcomes can be measured and incentivized, programs can realize the ultimate benefit of value-based care: a higher-value care experience at sustainable long-term costs.

We argue that if we can refine and validate these person-centered outcome metrics and if we can successfully integrate them into an existing HIV program, then care and quality of life and ultimately health outcomes will improve because providers and program staff will use indicator data to improve care provision. Achieving this theory of change will require a significant cultural reorientation and thinking more broadly, within and beyond individual HIV programs. Specifically, indicator data can inform the provider-client relationship, promote integrated service delivery at the program level, and influence policy and budget allocations at the population level. Informed by these indicators, providers can modify care provision by personalizing treatment through early diagnosis of psychosocial factors that can influence adherence to treatment, clinical outcomes, and ultimately quality of life. These shifts are critical to an integrated response to the health needs of PLHIV and for reaching and sustaining the last mile in HIV epidemic control.¹³

The data insights from the people-centered metrics can facilitate this shift in multiple ways. The insights from the indicator assessing mental well-being, for example, can sensitize providers to prioritize their client’s psychosocial needs and encourage programs to design services and referral mechanisms that address those needs. For the indicator assessing financial burden, the insights can alert providers to the ways in which financial insecurity can influence their clients’ HIV care and encourage programs to design financial packages and associated services (i.e., differentiated care models, skills and livelihood development). For the indicator assessing social support, the insights can help identify patients whose social isolation may impact their treatment and promote program’s linkages with supportive services such as community-based support groups. These increased performance feedback loops can help improve provider performance, build trust in the health system, and ultimately improve clinical outcomes by encouraging retention and adherence. These examples demonstrate how data insights from the metrics that matter most to individuals can facilitate success by informing provider, program, and policy-level action.