Chapter 3

Strategies for Transforming Mental Health Care
Through Data-Based Decisionmaking

Kathryn Power, M.Ed.
Director, Center for Mental Health Services
Substance Abuse and Mental Health Services Administration

Transformation Goals

The Center for Mental Health Services (CMHS) is charged with providing leadership for the national system that delivers mental health services and with facilitating the transformation of the mental health care system called for in the report of the President’s New Freedom Commission on Mental Health, Achieving the Promise: Transforming Mental Health Care in America (President’s New Freedom Commission on Mental Health, 2003). This report calls for major change in how mental health care services are organized and delivered. In a transformed system, the commission envisions that U.S. mental health care will be consumer and family-centered, focused on recovery, and guided by informed decisionmaking. In this system, the highest quality of mental health care and information will be available to consumers and families, regardless of their race, gender, ethnicity, language, age, or residence.

Achieving this transformation means overcoming impediments to high-quality mental health care for all Americans. The commission noted that, despite enormous investments in the scientific knowledge base and the development of many effective treatments, most Americans are not benefiting from these investments (Department of Health and Human Services (DHHS), 1999). Treatments and services based on rigorous clinical research are too slowly applied in practice, and consumers and clinicians lack access to the information they need to guide decisionmaking. To overcome these barriers, the commission recommends changes in how a broad range of data are collected, shared, and used at the national, State, community, and consumer levels.

Need for a Strategy

Achieving the Promise echoes the goals identified by the Institute of Medicine (IOM) in its report, Crossing the Quality Chasm: A New Health System for the 21st Century (IOM, 2001). The IOM report states that, between the quality of health care Americans have and that which they could and should have “lies not just a gap, but a chasm.” The IOM identified two specific forces that are impeding quality health care:

1. The growing complexity of science and technology, with lengthy delays between when an innovation is developed and when it is implemented in clinical practice
   
2. The failure to implement treatments known to be effective

These two reports both document a critical need for mental health system transformation, even within current fiscal limitations. Creating a new policy framework for data-based decisionmaking is essential to facilitating a transformed system. Keeping in mind the limited resources available to accomplish the task, a realistic approach is to take current knowledge and to share it with those who need to know so they can use it for data-based decisionmaking. The Federal Government and the States have a major responsibility to undertake this sharing.

Questions to answer in developing a new policy framework include the following:

1. What is the “applied practice into research” agenda?


2. What data are needed to support this agenda?


3. How should data collection and dissemination be approached?


4. How should data from all the different groups involved in mental health care be accessed? For example, how should data be acquired from Federal programs such as Medicaid and the Veterans Health Administration?

The answers to these questions lie in the resolution of much broader problems that affect the current U.S. mental health care system. The New Freedom Commission described a large-scale problem of fragmented, disconnected, and inadequate services and knowledge. In the commission’s assessment, these problems—and the need for system transformation—exist at all four levels of involvement: Federal, State, community, and consumers and their families. The Federal Government is the single largest payer of mental health and supportive services, including health care, housing, employment, and education. Programs with the most substantial role in financing mental health services, such as Medicare and Medicaid, do not have missions focused on mental health care. Each of the many Federal programs contributing to mental health care financing has a complex, and sometimes contradictory, set of rules. Each has its own data and reporting system; information is seldom collected and shared in a common framework. As a result, services are disconnected and are seldom tailored to the needs of individual consumers.

On a national scale, the consequence is that people with mental illnesses are being denied access to quality care and falling into the quality chasm. There are nearly 200,000 chronically homeless persons in America. A large percentage of chronically homeless individuals have a mental illness, a substance abuse disorder, or both. Each year, approximately 800,000 persons with serious mental illness are admitted to U.S. jails. Jails are not designed to be treatment facilities. One of most distressing and preventable consequences of undiagnosed, untreated, or undertreated mental illnesses is suicide. In the United States, nearly 30,000 persons commit suicide each year.

Nature of a Transformed System

In a transformed national system, the New Freedom Commission envisions that Federal programs will be better aligned across agencies to improve access to and accountability for mental health services at the Federal, State, community, and consumer levels (see figure 3.1). In addition, the Federal Government will advance and accelerate the transfer of science to service. Technology and telehealth will become major vehicles for informing, coordinating, and delivering care.

At the State level, the New Freedom Commission noted that State mental health and behavioral health authorities have an enormous responsibility to deliver mental health care and support services, yet they have limited influence over many of the programs that consumers and families need. The commission also noted that States lack direct control or accountability for most resources for people with serious mental illnesses, such as Medicaid. As a result, mental health care delivery at the State level faces the same problems of fragmentation and lack of coordinated information as exist at the Federal level.

The New Freedom Commission envisions that, under a transformed system, States will develop comprehensive plans outlining how a full range of programs will be coordinated and delivered. In exchange for greater flexibility in determining how Federal, State, and local funds are combined to meet consumer needs, the States will be held more accountable to the Federal Government, as well as to consumers and their families. Improved performance and outcome data will be critical to this process of transformation.

Also crucial is the community level, where policy becomes practice and the opportunities to improve the lives of persons with mental illnesses are greatest. Unfortunately, this is the level at which the lengthy delay between research and practice is most apparent. Too often, providers and consumers do not have access to the most recent information about which treatments and services are the most effective. Too often, they lack the information they need to make informed decisions about care. In addition, consumers may not have access to the full range of services they need. In the Olmstead ruling (1999), the U.S. Supreme Court affirmed a person’s right to live and receive appropriate treatments within the community. Consumer recovery hinges on community care plans that take into account the full range of an individual’s needs as a whole person. These needs include finding and maintaining housing, finding and keeping a job, and developing a caring social support network. Meeting these needs demands the coordination of a broad-based coalition of community organizations and leaders. All too often, stigma, ignorance, and lack of involvement by groups that should be involved are preventing the delivery of high quality care at the community level.

This situation would be drastically altered under a transformed mental health care system. The New Freedom Commission envisions a system in which consumers receive the best possible community-based treatments, services, and supports through individualized recovery plans of care. This care will be culturally competent and extend to geographically remote communities. Necessary care will begin early in the life of an illness because a broad group of community organizations, such as schools and faith-based organizations, will assume a role in helping to detect potential illnesses, advocating treatment, making appropriate referrals, and achieving and sustaining recovery.

At the consumer level, the New Freedom Commission found that a major barrier to treatment is that consumers and families typically have limited influence over the care they receive. Without choice and the availability of acceptable treatment options, some people with mental illnesses cannot or choose not to engage in treatment or to participate in timely interventions.

Under a transformed system, the commission envisions that consumers and their families will play a significant role in shifting the focus of treatment to recovery. It will be their role—as well as their responsibility—to participate in evaluation, planning, research, training, and service delivery of mental health care. Consumers also will have greater control over funds spent on their care. This will give consumers an economic interest in obtaining and sustaining recovery, and shift the incentives toward a system that promotes learning, self-monitoring, and accountability.

The ultimate goal of system transformation is to bring together the four levels—Federal, State, community, and consumer and family—in crossing the quality chasm, fostering recovery in all individuals.

Strategy for Transformation

A clear strategy is available to effect transformation of the mental health care system. Process change will be critical to accomplishing this goal. In its Chasm report, the IOM gives us a framework for looking at process problems at each of these levels and solving them. Figure 3.2 provides an outline of this framework. The column on the left contains the four levels of involvement. Across the top of the grid are the four strategies for system transformation proposed by the IOM.

The next step is to fill in each square of the grid by identifying a strategy and a solution at each level. In many instances, the New Freedom Commission or the IOM has recommended actions that fit into the squares. When both problems and their potential solutions become commonly accepted, we are left with the very challenging questions of “What is needed?” “Who will do it?” and “How?”

1. Transform Financing.

The current U.S. system of mental health care relies on numerous sources of financing (DHHS, 1999). Many of these funding streams are tightly restricted in how they can be used or for whom. If the mental health care system is to be responsive to the unique needs of consumers, health care financing must be transformed so that it is flexible enough to accommodate the needs of each person. One solution to this problem at the Federal level is to eliminate funding silos that prevent better coordination of services.

Investigation has begun of ways to transform health care financing so that individuals can assume greater control and accountability in seeking mental health care. The use of medical savings and spending accounts, as well as vouchers, appears to be particularly promising. Under this new system of financing, medical savings and spending accounts would be
developed for either the public or the private sector. In the private sector, individuals would contribute pretax dollars from earnings for future care. In the public sector, funds from a range of entitlement sources would be deposited into an account for use in future care. This financing system can promote continuity of care among the different types of services while allowing consumers a high degree of self-determination in how funds are spent.

2. Transform Human Resources.

There is a national crisis in the training of the behavioral health workforce. Not only is there a shortage of providers, but many of the system’s most experienced providers are not trained in cutting-edge, evidence-based practices. In addition, there is a serious need to cross-train primary care providers to be more knowledgeable participants in providing mental health care. Primary care providers prescribe the majority of psychotropic drugs for both children and adults. About 70 percent of the care for common mental disorders is delivered in general medical settings (Kessler, personal communication). Yet primary care physicians may not be fully trained to diagnose, treat, or make appropriate referrals for persons with mental illnesses. The bottom line is that we cannot effectively serve people in need if the frontline providers are ill equipped to use breakthroughs in modern medicine.

Efforts to transform human resources are already under way. With funding from the Substance Abuse and Mental Health Services Administration (SAMHSA), the American College of Mental Health Administration and the Academic Behavioral Health Consortium have formed the Annapolis Coalition, whose mission is to promote major reforms in the quality and relevance of education and training for behavioral health care. Its work is proceeding in three phases:

1. Building consensus about the nature of the workforce crisis and the key strategies of reform


2. Disseminating recommendations


3. Focusing on competencies

The Annapolis Coalition has completed one cycle of its work and published the results in the journal Administration and Policy in Mental Health (Hoge & Morris, 2002). In brief, the coalition found that behavioral health education is not keeping pace with changes in managed care and technology, nor is it adequately addressing the needs of diverse consumers. Equally important, many persons providing direct care and support—such as paraprofessionals and families—are receiving very little educational information.

The current focus of the coalition is to promote the use of competency-based approaches to building a stronger workforce. Issues being addressed are as follows:

• Fundamental concepts and definitions of competencies


• Strategies for building competency models


• Core competencies for key segments of the workforce


• Tools for assessing competency

The coalition will draw heavily on the advanced work of business and industry to address these issues of competency, which brings up a very important point of system transformation. If we are to make cost-effective and efficient changes to the mental health care system, we need to learn from and build on the best practices employed by other systems.

3. Transform Treatment Through Rapid Integration of Evidence-based Practices and Adoption of Performance Measures.

Mental health research is making great strides in knowledge of the brain, its behavior, effective medications, and psychosocial interventions. The field is too slow, however, in transferring research to service. The lag between the discovery of effective treatments and their incorporation into routine patient care can be as long as 15 to 20 years (IOM, 2001).

There must be a push to integrate evidence-based practices rapidly on the clinical, program, and system levels. Information should be presented in a population or aggregate view to support population management and quality improvement and in a patient-centric view for individual patient care. For the mental health care field, integrating evidence-based practices requires determining what is the best practice, developing the specific description of how to adhere to the practice, and presenting it in a timely fashion. The most critical need is to make current standards of practice available at the time and place where decisions are being made.

Also necessary is the integration of evidence-based practices into consumer-operated services for recovery. Consumer-run services broaden access to peer support and engage more individuals in traditional mental health services. Consumers who work as providers help expand the range and availability of services and supports that professionals offer, and they are living proof of recovery in action.

SAMHSA is taking steps to identify and disseminate evidence-based practices more rapidly. One important and recent advance is the expansion of the National Registry of Effective Programs and Practices (NREPP). NREPP conducts expert evaluations of programs to determine model and promising evidence-based interventions. These programs are then included in a national registry. Last year, NREPP was expanded by adapting its criteria to mental health and co-occurring disorder treatment programs.

There is another very important consideration to implementing evidence-based practices. Evidence-based practices must be developed in the context of quality improvement models that serve as a measure of self-improvement, not as an external constraint. The basic concept of Crossing the Quality Chasm is that quality improvement must result from the personal commitment of the persons involved rather than from fear of penalties, such as loss of funding.

SAMHSA is working to instill this concept of internal quality control through changes proposed to its Community Mental Health Services Block Grant program. Previously, State reporting requirements emphasized accountability based on expenditures and documentation of compliance. Under the proposed changes, States would be more accountable for performance-based outcomes. The purpose of this change is to promote an atmosphere in which States integrate best practices into their programs as part of a continuing cycle of quality improvement. The Federal Government would not use performance reporting to compare one State with another. Instead, each State would use these data to compare its current performance with its desired outcomes. Unlike business, the public sector does not have profit as a measure of performance. However, there is a very real need to be able to measure how effectively we provide mental health care services to those who seek them. Like business, we can tie performance goals to specific outcomes in terms of growth, costs, quality, and customer satisfaction. This means developing quality metrics to be used by health care systems, employers, and consumers in selecting services and providers, with the ultimate goal of creating a system based on, and rewarding, high-quality care. Simply stated, a need exists for a national vehicle for sharing data on the scope of mental health problems, the responses to those problems, and our successes and failures in addressing them. Ideally, data standards would have three attributes:

1. Consensual development


2. Universal adoption


3. Implementation through information technology

SAMHSA, together with other agencies and in coordination with the National Association of State Mental Health Program Directors (NASMHPD), has been working on a data reporting system that can achieve these standards. The result is the Uniform Reporting System (URS), which is now being used by 50 States and 8 territories in connection with their block grants. In addition, SAMHSA and the NASMHPD have developed the National Outcomes Measures to guide States in determining performance-based outcomes. The latter are a subset of the URS measures.

Data mean little, however, unless they are implemented and used for planning and decisionmaking, which is the basis for developing a universal decision support system. At the national level, integration of data may be provided by the States into Decision Support 2000+ (DS2000+). The goal of this system is to frame data standards within the context of decision support rather than information management. DS2000+ includes data standards for each domain of the public health model. All relevant data sets are designed to meet Health Insurance Portability and Accountability Act (HIPAA) requirements. Accommodating the new HIPAA requirements allows evolving another concept in data standards for DS2000+. This is the concept of “value added”—what specific value added can be attributed to mental health and behavioral health care? Value added measures make it possible to incorporate some of the important features of behavioral health care that are not reflected through HIPAA data, such as the delivery of culturally competent mental health care. Future development of data standards will revolve around three key concepts for improved data-based decisionmaking:

1. Customization of decision support tools


2. Incorporation of feedback loops to improve self-direction and decisionmaking


3. The combination of quantitative and qualitative data

4. Transform Health Care Through the Expanding Use of Information Technology.

Information technology is the force that can pull and keep data together while crossing the quality chasm. It is the continuous link needed between science to service and service to science, as guided by consumer- and family-driven needs. In addition, information technology is, in itself, a powerful tool to transform the health care system because it can get care to people who cannot get it any other way (Manderscheid, 2005).

The New Freedom Commission highlighted the importance of information technology to transforming mental health care by making information technology the cornerstone of one of its six goals. Goal 6 of Achieving the Promise is that “Technology is used to access mental health care and information.” The commission further defined this goal through two recommendations:

1. Using health technology and telehealth to improve access to and coordination of mental health care


2. Developing and using integrated electronic health record and personal information systems

Using information technology as the source of information for persons at all levels of involvement, and with all levels of basic understanding of what the data mean, presents a serious systems conundrum. Output from online decision support systems will have to be responsive to consumer needs on an individual level, while the system itself is based on standardized data that permit comparison with benchmarks and other users. This is a conundrum because consumers will need person-specific information, while service systems will need comparable, aggregated statistical data. Another aspect of this conundrum is the need for information to improve service quality, while at the same time protecting consumer privacy and confidentiality.

Charge for the Future

A collective effort to combine resources, both financial and human, is needed to leverage the resources’ impact. Transforming the mental health care system from the Federal to the consumer level is a task that will require both resources and commitment. Partnerships must be built where they have not existed in the past, including shared responsibilities and accountability. Professional identities must be merged rather than forming barriers to comprehensive behavioral health care. Coordination among the four levels of involvement requires not only new attitudes but also new ways of working together to accomplish all that needs to be done to collect, disseminate, and utilize new information.

Almost 44 million Americans are affected by mental illness in any given year. More than 5 percent of our Nation’s population is diagnosed each year with a serious mental illness, such as schizophrenia, bipolar disorder, or severe depression; at least as many children are diagnosed with a serious emotional disturbance. These are the most important statistics to remember in developing and refining a data-based decisionmaking system for mental health care, because the majority of these persons receive no care at all.

Mental illness can be treated effectively, and people can and do recover. Most people with mental illnesses experience success at work, raise healthy families, and are contributing members of their communities. However, their recovery depends on getting quality services when and where they are needed—preferably early in the course of an illness and close to home. Individuals’ need to obtain quality services should be the driving force behind any data-based decisionmaking system.

President Bush delivered a State of the Union address (2004) in which he said, “We are living in a time of great change—in our world, in our economy, in science and medicine. Yet some things endure—courage and compassion, reverence and integrity, respect for differences of faith and race.” The U.S. mental health care system is also experiencing a time of great change—in our understanding, in our economy, in our science and medicine and technology. While taking advantage of these changes, the system must integrate those same qualities of respect for each individual that the President used to characterize our Nation—“courage and compassion, reverence and integrity, respect for differences of faith and race.” The most important bridge over the quality chasm is the one that takes us from idea to action, from thinking about what is necessary to doing what is necessary.

References

President George W. Bush. State of the Union Address, January 20, 2004.

Hoge, M. A., & Morris, J. A. (2004). Behavioral health workforce education and training. Administration and Policy in Mental Health, Special Issue, 29(4/5), 295–439.

Institute of Medicine. (2001). Crossing the quality chasm: A new health system for the 21st century. Washington, DC: National Academy Press.

Kessler, R. A. (2004). Personal communication.

Manderscheid, R. W. (2005). Information technology can drive transformation. Public Manager, 33(3), 3–6.

The President’s New Freedom Commission on Mental Health. (2003). Achieving the promise: Transforming mental health care in America. Final report. DHHS Pub. No. SMA-03-3832. Rockville, MD: U.S. Department of Health and Human Services.

U.S. Department of Health and Human Services, Public Health Service, Office of  the Surgeon General. Substance Abuse and Mental Health Services Administration, Center for Mental Health Services, National Institutes of Health, National Institute of Mental Health Surgeon General’s Report. (1999). Mental health: A report of the Surgeon General. Rockville, MD: Author.