Advancing The Field Of Complex Care By Studying The Lessons Of America’s HIV Epidemic

One can make a strong case that throughout most of its trajectory, the HIV epidemic in the United States has been distinguished by many of the same hallmarks that we now characterize as indicative of “complex care.” Because AIDS was a new disease of unknown etiology that could present as a myriad of rare opportunistic infections and unusual malignancies, its treatment was complex, requiring the involvement of immunologists, infectious disease specialists, and oncologists. The non-medical needs of people living with AIDS were equally profound. The extreme debilitation that developed during the end stage of illness made daily activities such as grocery shopping, cooking, and laundry nearly impossible without active support from a cadre of volunteers. And given the virus’ disproportionate impact on gay men and people who inject drugs, two minority groups subject to significant stigma and social disenfranchisement, publicly funded services to support the physical, social, and mental health needs of people with AIDS (PWA) were often lacking and, when present, usually inadequate.

As the following examples demonstrate, early community responses to the pandemic were person-centered, cross-sector, and team-based, three defining attributes of complex care. A description of San Francisco’s model of HIV care published in the late 1980s emphasized the need for a continuum of public health, medical, psychosocial and support services delivered by a “wide range of individuals, agencies and institutions.” An analysis of the nonprofit sector’s response in San Francisco, published in that same time period, estimated that three large community-based organizations had provided more than 80,000 hours of social support and counseling services to PWAs during fiscal years 1984–85. Practical support provided by “buddies” and other community-based volunteers enabled PWAs to remain at home during their final days and also provided alternatives to costly hospitalizations.

However, we need not limit ourselves to the early years of the AIDS epidemic to find positive examples of how complex care for people with HIV infection has been addressed. Without implying that our nation’s approach to HIV has been flawless or without missteps, there are, nonetheless, instructive cases in our response to HIV that can be held up to inform how we might tackle other complex care issues. Using the Blueprint for Complex Care as a framework, this brief explication highlights several policies, procedures, and practices that have been developed over the years to improve HIV health outcomes, suggesting that related efforts might be employed to achieve improvements in other areas of complex care. Although the examples presented are specific to HIV care, they align closely with four recommendations found in the Blueprint, an action plan developed to improve the lives of people with complex health and social needs that’s based on published literature as well as input from providers, consumers, and other stakeholders. The four recommendations are:

• Enhance and promote integrated, cross-sector data infrastructures
• Develop quality measures for complex care programs
• Foster peer-to-peer connections and learning dissemination
• Value the leadership of people with lived experience

Integrate Data To Improve Complex Outcomes

The Blueprint states that “improved access to integrated, cross-sector data is critical to building the field’s knowledge and its ability to serve people with complex health and social needs.” Yet, many of our data systems operate in silos without communication across medical, social, and public health programs and services. For example, consider a Centers for Disease Control and Prevention (CDC)-funded initiative conducted by the New York State Department of Health and Mental Hygiene, that sought to strengthen collaborative work across HIV, sexually transmitted disease, tuberculosis, and viral hepatitis programs. Findings from the initiative revealed that frontline staff were often unclear about laws and policies related to diseases outside of their individual bureaus and that this lack of clarity hindered their ability to share data, even within the public health department. As such, an important first step in the process of integrating/sharing data across different programs is to ensure that program staff, including those who collect and manage data, understand the state and local laws that control the sharing and use of data. A sound knowledge base of relevant legal requirements can help to maximize opportunities for data sharing across different programs.

In some instances, advocacy may be required to update state laws to enable data sharing across systems. Such was the case in New York when, in 2014, state law was amended to permit the sharing of patient-specific data from the state’s HIV registry with a patient’s physician, for the purposes of ensuring retention in HIV care. Individuals responsible for HIV surveillance in the New York City Department of Health worked with their clinical counterparts to develop a joint protocol that outlined the process for data exchange to identify HIV-infected individuals who had fallen out of HIV care, specifying roles and responsibilities of project staff in the health department and at the HIV clinic. This project demonstrated that data sharing resulted in a far more efficient process for identifying persons who had truly fallen out of HIV care versus those who were current with care, had moved to another jurisdiction, transferred to another clinic, or were deceased. More importantly, a majority of the out-of-care patients who were identified and contacted through this effort agreed to re-initiate HIV care. The authors who evaluated this project observed that the time and effort not spent in attempting to locate persons who had moved out of the jurisdiction or were otherwise in care could be directed to reaching more persons who were truly out of care.

Develop Measures To Assess The Quality Of Complex Care

Metrics for complex care programs must extend beyond cost and use and include measures of health and well-being. When considering the quality of complex care, it’s especially important that successful outcomes not be limited solely to the absence of disease. In regard to HIV care programs, for the past decade, the HIV continuum of care has been embraced as the standard framework for assessing the quality of care. The HIV care continuum, or cascade, provides a population-level depiction of the proportion of HIV-infected persons who, following diagnosis of their infection, are promptly linked to HIV medical providers and receive continuous care resulting in viral suppression (VS). Sustained suppression of HIV replication as a result of successful treatment (estimated at 65 percent across the US in CDC’s most recently available report) results not only in individual clinical benefit (that is, by limiting ongoing immune damage) but has also been shown to be associated with population-level benefits; namely, persons with undetectable viral loads are effectively unable to transmit HIV to their sexual partners.

A recent permutation of the HIV care continuum shows how improved measures can provide an even more accurate and comprehensive snapshot of complex care quality. Instead of simply looking at the proportion of diagnosed individuals who achieve HIV VS, researchers now recommend looking at the time it takes to achieve VS. Namely, a longer interval between HIV diagnosis and VS indicates a failure to promptly link persons into HIV care or an inability to consistently retain HIV-infected persons in care—often because of competing social needs such as homelessness or substance use. Thus, evaluating the time from HIV diagnosis to VS evaluates the “collective effectiveness of HIV prevention and treatment activities in a given locale”—including those support services that promote retention in care, such as community-based peer navigation and stable housing. When this measure (that is, the time from HIV diagnosis to VS) was applied statewide in Alabama, evaluators found substantial geographic differences in the time to achieve VS, indicating locales and local health systems that could benefit from further investigation and subsequent public health actions to shorten the interval to VS and thus improve HIV health outcomes.

Foster Peer-To-Peer Connections And Learning Dissemination

By definition, clients/patients with complex medical and social care needs will interact with multiple providers and different systems. Therefore, fostering connections among individuals across the various systems and organizations that “touch” these clients/patients, so they can share knowledge about common problems and collaborate to identify workable solutions, is a pivotal strategy to improve outcomes. The HIV Health Improvement Affinity Group (HHIAG) is an example of how this recommendation has been operationalized in the world of HIV care. The HHIAG, launched in late 2016, was a joint initiative of three federal agencies (Centers for Medicare and Medicaid Services, CDC, and Health Resources and Services Administration [HRSA]) in collaboration with the Department of Health and Human Services Office of HIV/AIDS and Infectious Disease Policy, in partnership with the National Academy of State Health Policy; its goal was to support collaborations between state public health and Medicaid agencies to improve health outcomes for people living with HIV.

State health department and Medicaid staff from 19 states joined the initiative, participating in webinars and other learning community activities that resulted in the development of state-specific action plans designed to improve HIV health outcomes. An evaluation report issued following the completion of the initiative reported that participants found peer-to-peer exchanges where colleagues shared their successes, barriers, and future plans, to be the most helpful. Thirteen of the participating states were able to develop or refine data-sharing agreements between state Medicaid and state public health departments. Improving access to data across state agencies allows for better estimates of the proportion of persons living with HIV served by Medicaid who are engaged in care and have achieved VS—an essential metric to guide HIV quality improvement activities. However, evaluators reported that “staff turnover, limited resources, competing priorities, and state Medicaid reforms” all presented challenges to implementing action plan objectives. The obvious lesson here is that fostering peer-to-peer connections to share knowledge and identify solutions will not result in improvements in complex care without the concomitant investment of resources to implement and sustain necessary changes in policy and practice.

Value The Leadership Of People With Lived Experience

Without question, the insights and perspectives of persons with complex care needs are powerful assets that can guide system change. But, as noted by the authors of the Complex Care Blueprint, they are often “not adequately represented.” Without overstating the case, one can argue that the many positive examples provided by the involvement of people living with HIV into HIV policy, practice, and research provide a detailed template that could be adapted to inform other areas of complex care. Among the most well-known examples of people living with HIV participating in decisions about their own care is the HRSA’s mandated involvement of people living with HIV in decision making about the allocation of federally funded medical and support services in metropolitan areas severely impacted by the HIV epidemic. The HRSA, the agency that manages the Ryan White HIV/AIDS Program, requires that the membership of HIV Planning Councils (the bodies that make the allocation determinations) must reflect the demographics of the local HIV epidemic and that at least 33 percent of planning council members must be recipients of Ryan White HIV/AIDS Program services.

As with many of the previously stated examples, achieving the goal of authentic client/patient involvement requires time, effort, and resources. Furthermore, the role of persons with lived experience must not be limited to problem identification and priority setting; they must also be involved in identifying and implementing solutions to improve complex care. For example, persons living with HIV who are not well engaged in conventional care because of complex life circumstances (for example, substance use, unstable housing, food insecurity, and so forth) have endorsed the importance of walk-in HIV clinic visits that do not require advance scheduling as a way to improve access to care; they also opined that on-demand availability of HIV care minimizes the stigma of characterizing persons who can’t keep scheduled appointments as “bad patients.”

Moving beyond tokenism to authentic engagement of clients/patients with complex needs in their care will require intervention at multiple levels. Consider the example of New York State’s involvement of people with HIV (PWH) in their quality improvement program. In addition to the more traditional approach of an advisory committee composed of PWH that meets quarterly to provide recommendations to the state’s HIV quality management program, New York State also developed a peer-certification program to build capacity among PWH to participate in health care decision making and policy development. As part of their statewide implementation strategy, New York created an instrument for measuring the involvement of consumers in HIV quality management programs that can be used in health care organizations across the state. Should the New York model of consumer involvement in HIV quality improvement programs be applied to other situations where complex care is delivered, it will be necessary to evaluate implementation challenges and potential outcomes, including its eventual impact on clinical outcomes and on levels of client/patient satisfaction. The findings from these evaluations will help to inform others who are working to achieve the meaningful incorporation of input from persons with lived experience.

Adapt And Evolve

In part, our nation’s persistent health disparities are due to our collective failure to address the complex care needs of vulnerable populations, whose medical needs are exacerbated by negative social and environmental circumstances. Too often we expect consumers/patients with complex care needs to conform to existing systems of care—rather than understanding that existing health and social systems and the practices therein must adapt and evolve to meet the specialized needs of these individuals. Although the examples cited herein are specific to HIV, they are instructive to the larger field of complex care and underscore the necessity of modifying policies, processes, and systems to meet the needs of those who require complex care. Such change is neither easy nor immediate, but it is nonetheless critical.