The Case for Severe Mental Illness as a Disparities Category

People with severe mental illness—defined by the Substance Abuse and Mental Health Services Administration as a diagnosable mental, behavioral, or emotional disorder that causes serious functional impairment that substantially interferes with or limits one or more major life activities, and may include major depression, schizophrenia, bipolar disorder, and other mental disorders (1)—have poorer access to health care services and worse health outcomes than the general population. Although this discrepancy is partially attributable to the symptoms and functional limitations that directly result from severe mental illnesses, it is widely recognized that these trends also stem from discrimination and stigma. In this Open Forum, we propose to formally designate severe mental illness as a disparities category. Such a designation would expand oversight and monitoring of health care services and outcomes in this high-risk population, which could help advance care and support advocacy to improve the lives of people with mental illness.

Evidence for Severe Mental Illness as a Disparities Category

Health services researchers have long recognized that people with severe mental illness have higher rates of morbidity and mortality than the general population (2). A recent meta-analysis found that people with mental disorders have an all-cause mortality relative risk of 2.22 compared with the general population, with a median of 10 years of potential life lost (3). Furthermore, a severe mental illness diagnosis is associated with health care of lower quality and higher cost (4).

These profound trends, at least in part, stem from discrimination, exclusion, widespread stigma, and criminalization of individuals with mental illness (5). The consequences are profound in an individual’s personal and professional life, and they negatively influence experiences in both general medical and mental health settings. As a result, people with mental illness are reluctant to seek help, they are subject to “diagnostic overshadowing” that leads to underdiagnosis of comorbid medical illnesses, and they receive unequal treatment compared with the general population (6).

As such, people with severe mental illness fit within the U.S. Department of Health and Human Services (DHHS) definition of a health disparity category: a subpopulation with “a particular type of health difference that is closely linked with social, economic, and/or environmental disadvantage” (7). Furthermore, in its report on recommendations for the framework and format of Healthy People 2020, the DHHS Secretary’s Advisory Committee on National Health Promotion and Disease Prevention states, “Health disparities adversely affect groups of people who have systematically experienced greater social or economic obstacles to health based on their racial or ethnic group, religion, socioeconomic status, gender, mental health, cognitive, sensory, or physical disability, sexual orientation, geographic location, or other characteristics historically linked to discrimination or exclusion” (7). In contrast, the National Institute on Minority Health and Health Disparities (NIMHD) and the National Quality Strategy do not formally recognize people with severe mental illness as a disparities group.

Disparity Designation

Addressing health disparities is a key focus of the DHHS aim to achieve better care, healthy people and communities, and affordable care (8). The Minority Health and Health Disparities Research and Education Act of 2000 authorized the Director of NIMHD, in consultation with the director of the Agency for Healthcare Research and Quality (AHRQ), to define health disparity populations (9). For example, in December 2016 the Director of NIMHD announced the formal designation of sexual and gender minorities as a health disparity population for research purposes for the National Institutes of Health, building on extensive research documenting such disparities (9).

Although designation as a health disparity population does not necessarily result in an immediate allocation of resources, it can bring greater national attention and important implications. For example, AHRQ releases its National Healthcare Quality and Disparities Report each year (10). Designation of people with severe mental illness as a disparities group would signify inclusion in these annual national reports and help advance research on this population. Disparities designation puts pressure on organizations and agencies to develop quality measures for use in value-based payment models, to incentivize the development and application of evidence-based practices, and to expand resources for research to better understand the factors that result in unequal care.

Consideration of a new disparities category must take into account important counterarguments. First, there is already a scarcity of resources to adequately address the needs of all groups who experience worse health care because of disparities. Second, people with severe mental illness make up approximately 4%−6% of the total population, which is relatively small compared with other disparities groups. Finally, the category of severe mental illness differs from traditional designations in that it is partially defined by a group of diagnoses rather than by demographic characteristics.

Nevertheless, we believe that there is an urgent need to better understand and address the unique contributors to stigma and discrimination toward people with severe mental illness, who have disproportionately high needs, poor outcomes, and costly care (11).

Influence of Disparities Designation on People With Severe Mental Illness

Designating severe mental illness as a disparities category would have important implications for health policy and quality measurement, health services research, and clinical practice.

Impact on policy and quality measurement.

Disparities categories are an important focus of quality measures and accountability tools to incentivize insurers, states, and providers to prioritize reduction of inequalities in health care. Significant progress has been made in defining and accounting for social risk in payment programs (12), but there are three measurement strategies that have yet to be fully developed and adopted: stratification, composite measures, and balancing measures.

Existing measures already endorsed by the National Quality Forum (NQF) could be adapted by stratifying for individuals with severe mental illness rather than the entire population. This approach would enable a direct comparison between performance on the NQF measure with the total population compared with the subpopulation of individuals with mental illness. NQF has already endorsed some measures that focus on severe mental illness, and leaders at NQF have begun to prioritize the review of additional health indicators for this population (13).

Addressing health disparities among people with severe mental illness can be further accomplished by developing quality indicators that measure aspects of care known to be problematic for this population, particularly at the interface of behavioral and general medical care. Take, for example, the high rates of diabetes, hypertension, and hyperlipidemia among people with severe mental illness. A composite indicator that measures medication adherence across these common comorbidities could capture important trends that directly affect these health disparities.

Creating novel indicators for this population would also allow for improved application of an important strategy in quality measurement: the use of balancing measures, which aid in interpreting findings of other measures. For example, a balancing measure that determines what proportion of people with severe mental illness are regularly seen in primary care would be a key data point to better understand the rates of adherence to antihypertensive medications in this population. These innovative methods will help to ensure accurate measurement of access to care, given that underutilization of services poses a challenge to tracking all disparities categories.

Impact on health services research.

Formal designation of severe mental illness as a disparities category would likely increase resources targeting research, technical assistance efforts, and implementation of evidence-based approaches to address underlying causes of these disparities. The monitoring of disparities in this population may be facilitated by using insurance claims and electronic medical record review, which would be both feasible and valid for rapid adoption and may avert the challenges that have impeded measurement of other health disparities designations, such as ethnicity and disability status (14).

A recent review identified several gaps in the literature on stigma in mental illness, including a need to better characterize the ways that stigma contributes to disengagement and discontinuation by those already in contact with services and the impact of antistigma interventions on help seeking (5). A subsequent paper states, “in view of the magnitude of challenges that result from mental health stigma and discrimination, a concerted effort is needed to fund methodologically strong research that will provide robust evidence to support decisions on investment in interventions to reduce stigma” (6).

Impact on clinical practice.

Potential strategies for reducing disparities specific to people with severe mental illness are different from other disparity categories and are likely to be uniquely addressed at the practice level. With increased attention and monitoring of services in this population, clinic systems, such as accountable care organizations, would be incentivized to expand linkages between behavioral health and general medical settings and apply evidence-based integration strategies that engage each individual’s needs, such as incorporating primary care services into specialty behavioral health clinics (15).

As a result, practices would be encouraged to more aggressively apply care management approaches to ensure that patients receive appropriate screening, preventive care, social services referrals, and effective treatment for all comorbid chronic conditions, including co-occurring substance use disorders. Furthermore, for people with severe mental illness who are also seen in general medical settings, mental health specialty providers and primary care providers would share mutual accountability for both mental health and general medical outcomes for their patients. These changes share a common goal: for people with severe mental illness to become further engaged in programs and interventions that improve health status and quality of life.

Conclusions

At this transitional moment in national mental health reform, we must devise strategies to encourage dissemination of effective, research-proven interventions currently available and expand the research base to develop new ones. We believe that the population with severe mental illness represents one of society’s most vulnerable and marginalized groups with disproportionately high needs and poor outcomes. Ethical priorities compel policy makers, payers, providers, and health services researchers to maintain special focus on populations most at risk. Officially designating severe mental illness as a disparities category is a key step to enhance advocacy to influence policy solutions, practice innovations, and political will.