Remarks by
A. Kathryn Power, M.Ed.
Director
Center for Mental Health Services
Substance Abuse and Mental Health Services Administration
U.S. Department of Health and Human Services
Data Infrastructure Grants: Recovery By The Numbers
Data Infrastructure Grantee Annual Meeting
Baltimore, MD
February 8, 2005
Attached is the text prepared for delivery; however, some material may have been added or omitted at the time of delivery.
Thank you, Dr. Berry
[SLIDE 1. Title Slide]
Good afternoon to everyone here. This, I believe, is what some people would refer to as a number-crunching meeting. And, yes, we are here to explore better ways to crunch numbers. We want to have available meaningful data to plan systems of care and to analyze service outcomes. However, we have a parallel objective for this meeting—to ensure that you, as data infrastructure grantees, comprehend your role in using data to create a mental health system focused on recovery. I am truly convinced that our planning and data reporting systems will not be structured appropriately until everyone involved fully understands, fully embraces, and fully integrates recovery as the underlying value guiding our work.
Shared values energize and mobilize an organization: they create a vision of what is both expected and possible. The DIG program is, itself, a demonstration of shared values across the Center for Mental Health Services (CMHS). Our Survey and Analysis Branch works very closely with our State Planning and Systems Development Branch to enhance program outcomes. Their efforts to interweave data-based planning and analysis on the Federal level—with recovery as the common value—should be a model for collaboration at the State level.
Without shared values, change within an organization is virtually impossible. To illustrate: Several years ago, an official of a national union wrote a column against a proposed data-based decisionmaking system. He was leading the revolt against a system that would dramatically alter the way his union members traditionally planned and conducted business. The official called proponents of the system, “closeted high-tech management bean counters who pick numbers from thin air, insert them in gee-whizzy software, and then try to force people to fit their numerical fantasies.” Not surprisingly, the “gee-whizzy” software he was rejecting then still is not in use today. Why?—Lack of commonly accepted organizational values to guide change.
Shared values shape our future goals—they give purpose and meaning to our work. In an article called “Overcoming Obstacles to a Recovery-Oriented System,” Dr. William Anthony describes values as the “organizational Velcro that binds vision to operations.” He notes, however, that massive system changes must occur before recovery becomes a shared value within the mental health community. His reasoning?—Because, as Dr. Anthony reports, we traditionally have judged mental health care according to service input rather than consumer outcome. He writes that “Prior to this vision of recovery, the mental health system had no consumer-based vision; that is, no vision that focused on what the consumer might get out of the system.” As a result, a transformed system focused on recovery represents an entirely new set of values.
[SLIDE 2. Recovery Definition]
But what is recovery? Recovery does not necessarily mean a "cure." Instead, recovery is a process, sometimes lifelong, through which a consumer achieves independence, self-esteem, and a meaningful life in the community. A recovery-focused system supports this process by seeing each person as an individual and not just as a person with a categorical disability. It makes available the variety of services that consumers need to promote recovery, such as housing, employment, and community-based care. Most important, a recovery-focused system has recovery—not disability—as the expected outcome of care.
Recovery can be facilitated by particular features of care and the care system. For example, treatment plans developed in partnership with consumers have proven more effective than plans dictated by providers. Consumers report that having hope and the opportunity to regain control of their own lives was vital to their recovery.
Recovery also can be inhibited, so we must speak of recovery-oriented planning and recovery-oriented services. This focus on recovery places the needs of consumers, and not bureaucracy, at the center of decisionmaking. Each of us here has a responsibility to promote recovery. We can meet this responsibility by becoming part of a systemwide culture that identifies and operates in a way that is consistent with recovery.
Whenever we have a decision to make, we have to ask ourselves, “What decision will best support consumer recovery?” This question applies to planning, policy, and budget decisions; workforce development decisions; and data infrastructure decisions. In terms of this meeting, we are here to make decisions about how we can make the best use of available data so that planning and service analysis reflects our vision of recovery.
During the past few years, we’ve made wonderful progress in developing data sets based on the concept of recovery. We are continuing to work together with the States to refine the Uniform Reporting System, or URS. Our goal is to develop standards that build on our partnership with the States to achieve positive, measurable outcomes for consumers.
[SLIDE 3. URS Basic Data]
The URS is generating the basic data?shown on this slide—for individuals served; services provided, and financial and staffing resources. A little later, Ted Lutterman and members of the State Planning and Systems Development Branch will give an update on the progress we’ve made in reporting URS data. He also will describe how we are integrating these data into the mental health block grant planning process.
Developing the URS has been a demanding process, requiring a great deal of hard work and collaboration between CMHS and the States. I personally want to commend the State commissioners, planners, and data specialists who worked with CMHS to improve their States’ data infrastructure. As a result, the States have increased their capacity to report meaningful data as well as to integrate these data into their State mental health planning process.
We are not using the data collected through the URS to compare one State to another. Rather, we intend that States use these data for planning and quality improvement within each State. We want the States to use this information to identify the gaps between service needs and service delivery, to set outcome goals, and to identify priorities for action. This is a recovery-focused process. It pinpoints where change is most needed to ensure that consumers have access to the treatments and supports they need. This knowledge, in turn, can guide planning and improved service delivery.
We’ve also made a great deal of progress on the mental health outcomes measures called for by Charles Curie, the administrator of the Substance Abuse and Mental Health Services Administration (SAMHSA). Administrator Curie has identified 10 national outcome domains that he wants addressed in each of our major programs. SAMHSA’s three Centers and the States have identified national outcome measures, or NOMs, specific to mental health, substance abuse prevention, and substance abuse treatment.
Previously, we have referred to our efforts to increase accountability for block grants activities as the “PPG” activity or the “core performance measures” activity. Future grant applications, similar to your 2005 block grant applications, will include the NOMs.
Fortunately, because of your hard work, the URS provided the national outcome measures for mental health. The next two slides show the NOMs for mental health as they now are formulated. These NOMs are still under development, which is why they differ slightly from those described in your block grant applications. In fact, we are using the DIG program to pilot test two of these measures. These two are decreased symptomatology/improved functioning and social connectedness. A block grant staff member will present a crosswalk of the NOMs and the former core performance measures in a later session.
As I read through the NOMs, consider how they reflect the concept of recovery.
Our NOMs for mental health are:
[SLIDE 4. NOMs 1–5]
- Decreased mental illness symptomatology/ improved functioning
- Increased or retained employment for adults and a return to or retention in school for children
- Decreased criminal justice involvement
- Increased stability in family and living conditions
- Increased access to services
[SLIDE 5. NOMs 6–9]
- Reduced utilization of psychiatric inpatient beds
- Increased social supports/social connectedness
- Client perception of care outcome
- Use of evidence-based practices. This last measure doubles as our measure of cost effectiveness.
Our NOMs are not service input measures, such as an increase in residential treatment programs or beds. These are consumer outcome measures; in other words, positive outcomes for the people we serve. I’m going to highlight three NOMs. They demonstrate the concept of recovery within the framework of SAMHSA’s overall vision—a vision which guides every policy and program we develop.
[SLIDE 6. SAMHSA’s Vision]
SAMHSA’s vision is “A life in the community for everyone.” Our mission is based on the underlying principle that people of all ages, with or at risk for mental and substance use disorders, should have the opportunity for a fulfilling life in their communities. This life includes a job and education, a home, and meaningful relationships with family and friends. Look again at these three measures:
[SLIDE 7. SAMHSA’s Vision—Three NOMs]
- Increased or retained employment for adults and a return to or retention in school for children
- Increased stability in family or living conditions and
- Increased social support.
What are these measures? A job and education, a home, and meaningful relationships—measures that clearly reflect consumer recovery as SAMHSA’s overarching organizational value and mission.
NOMs and other URS measures are a test bed for measuring our basic concepts of what recovery means to a consumer. We at CMHS will be reporting these outcome measures to SAMHSA by State and nationally. You, as DIG grantees, are absolutely vital to this process. I thank you now for all the work you will be doing during this meeting and throughout the life of your grants to make this reporting possible.
We will continue to make progress toward better data metrics for planning and analysis as we continue to work together. As you know, we are developing new sets of national data definitions, refining the Decision Support 2000+ system, and building a national electronic platform. As part of this work, we recently have begun to explore electronic health records, personal health records, and local health information infrastructures. We need DIG grantees to be our partners in this development.
Be assured that I use the acronym DIG with the utmost respect. I like to think of your work as essential to “digging” the foundation for transformed mental health planning and services delivery. It is on your efforts that we will build a planning and service delivery system that is accountable to the millions of Americans seeking recovery from mental illnesses.
[SLIDE 8. Purpose of DIGs]
When SAMHSA issued our request for DIG applications, we wrote that this program was intended to serve two purposes:
- To aid States in developing or enhancing their data infrastructure to improve management of mental health service delivery, and
- As a link in CMHS’s ongoing efforts to build community systems of care, as described by the final report by President Bush’s New Freedom Commission on Mental Health. You received copies of this report with your registration materials.
The Commission’s report is called Achieving the Promise: Transforming Mental Health Care in America. Released about 18 months ago, this report is an assessment of our national mental health system.
[SLIDE 9. Report Conclusion]
Achieving the Promise is a national call to action. The report concludes that “For too many Americans with mental illnesses, the mental health services and supports they need are fragmented, disconnected, and often inadequate, frustrating the opportunity for recovery. . . . Instead of ready access to quality care, the system presents barriers that all too often add to the burden of mental illnesses for individuals, their families, and our communities.”
The report calls for a complete transformation of our mental health system. It charges us to fundamentally change what we do and how we go about doing it so that we create a system that is consumer driven and focused on recovery.
Achieving the Promise outlines 6 broad goals and 19 specific recommendations for a transformed system. This slide shows the six goals.
[SLIDE 10. Six Goals]
DIG grantees have an important role in helping us achieve these goals. For now, let’s focus on Goal 6: Technology is used to access mental health care and information.
Goal 6 received particular emphasis in the New Freedom Commission’s report. Achieving the Promise states that the application of information technology to health care may be the most important medical advancement of the 21stst century. The report further declared achievement of this goal will be critical to achieving the other five goals of transformation.
The world of information technology that is overtaking the health community is extremely dynamic. Teletherapy is delivering treatment to consumers in remote locations. Health care providers are reminding people about appointments by automated voicemail. Providers also are using computers to assist with diagnosis, to present health education, and to monitor treatment. Just last week, the honorable Michael Levitt, the new Secretary of Health and Human Services, announced proposed regulations for online prescriptions. These regulations will support electronic prescriptions for Medicare when the prescription drug benefit takes effect next January.
A recent development in health information sharing is blogs. A blog is an ongoing Web site log, hence the word blog. It’s an open forum communication tool. People can post thoughts or ask and answer questions quickly. They can interact with other people.
Blogs are proliferating throughout cyberspace. A recent Google search of mental health blogs produced 360,000 hits. The mental health blogosphere is immense. It includes the likes of John Hopkins University, which sponsors a behavior and health blog, and the Atlanta Journal Constitution, which hosted a blog for Mental Health Day. Multiple self-help groups use blogs. Just think of the potential impact that blogs can have on the sharing of mental health information!
We haven’t even begun to harness the potential powers of technology to improve health care. Indeed, one health care expert has predicted, “It’s not impossible to see a future where at least some of the physician’s tasks are replaced by a ‘smart system’ programmed to impart advice depending upon the pattern of consumer responses.” Others predict that each of us will soon store all of our health information on microchip. Last October, the Food and Drug Administration approved a microchip that doctors can implant in a patient’s arm.
When we think about technology’s potential to promote recovery, we must think far beyond its current uses. Back in 1977, Ken Olsen, who was then president of Digital Equipment Corporation, made this prediction to the World Future Society. He said, “There is no reason for any individual to have a computer in their home.” Millions of Americans have proved him wrong. Mr. Olsen will be remembered forever more as a person who failed to envision the possibilities of technology to transform our daily lives. We now know that the uses of technology are limited only by our imaginations.
Information technology can be an extremely powerful tool for transforming mental health care. You can attest to this personally. Technology is changing dramatically the ways in which you are collecting, sharing, and using data to improve mental health care in your States.
As DIGs, you are creating a strong and sound data infrastructure to aid the reporting of useful information at both the State and local levels. You are testing how best to use these data to make good decisions—to plan, deliver, and analyze services. And you are helping SAMHSA fulfill its responsibility to help States provide mental health services that focus on recovery.
Without hard data, we cannot help States effectively—and you cannot tell us how you are doing. We need comprehensive and up-to-date information about:
- Which services are most needed in your community and others,
- How your planning process is addressing service needs, and
- How consumers rate the outcomes of the services they receive
These are consumer-driven metrics, based on the ultimate goal for the people we serve?recovery from mental illnesses. Promoting recovery should be the driving force behind what we do. The numbers we work with represent people and their hope in recovery. Their ability to have hope depends on how we use these numbers. We need to ensure that the services they need, or their children or their families or friends need, will be available to them—in sufficient quantity and adequate quality.
Transforming our data infrastructure to better support planning and service delivery is critical to the whole process of mental health transformation. Think back to the goals of a transformed system. The essential role of data-based planning and service delivery in transformation is clear. For example, Goal 3 is to eliminate disparities of care. Better data infrastructure among local providers will help us achieve this goal by identifying which communities, illnesses, or special populations are underserved. Our ability to define disparities numerically is the first step in planning how to decrease them.
Ultimately, transformation is about transforming lives. It’s about our capacity to enable people with mental illnesses to move toward recovery and a full life in their communities. Information technology, meaningful data—and you—are essential to achieving this promise.
[SLIDE 11. Gerstner Quote]
In closing, I’d like to share with you the philosophy of Louis Gerstner, the former CEO of IBM. He said, “Computers are magnificent tools for the realization of our dreams, but no machine can replace the human spark of spirit, compassion, love, and understanding.” That spark resides in each of you. It’s the spark that gives meaning to numbers; that helps us to identify with the very real, very human quest for recovery and its promise of a fulfilling life in the community. As you continue with your meeting, remember the millions of Americans who are seeking hope in recovery. For their sake, let us make the greatest use of every number and every system that can help make recovery possible. Thank you.
And now, I’d like to hear your questions or comments about the role of data in mental health transformation.
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