This Web site is a component of the SAMHSA Health Information Network
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This Web site is a component of the SAMHSA Health Information Network. |
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Section 2: Decision Support 2000+Chapter 4. Information Needs: A Consumer and Family PerspectiveLaura Van Tosh, Private Consultant Introduction The time has come for the field to examine and take action to develop a high-caliber information system. For too long, consumers and families have had extremely limited information on which to base their choices of health plans, services, and providers. While the field has made great strides in the development of innovative services and practices, our ability to collect and evaluate data uniformly is far behind the curve. If we do not possess the necessary data to determine the quality of care, we cannot make health care systems accountable. If we do not give consumers and families the tools to make informed decisions about their own health care, we put them at risk for failure. We must develop and implement a new mental health information system if we are to provide consumers and families with the data and tools they need and if we, as a field, are to meet our potential for excellence. Will the 21st century bring consumers and families closer to the goal of choosing a health care plan based on uniform data and information? Is the field any closer to developing a type of Consumer Reports for health care plans, effectively providing constituency groups with the means to make meaningful choices in determining the "best" health plan that closely meets the preferences of consumers and their families? What are some of the information needs consumers and families would like included in a new information system? Will the mental health and health care fields be capable of measuring quality, outcomes, and performance across health plans? How can health plans compete on an even playing field when we currently have no standardized way of measuring success? Will we be able to convey this information in a way that is meaningful and relevant to consumers and families? What are the benefits and challenges of a uniform data and information system for consumers and family members? What unique considerations should be addressed in the development of such a system? What Are the Information Needs of Consumers and Families? Consumers and families are primary stakeholders in today's mental health field. Although data and information systems traditionally have been geared to policymakers, administrators, and mental health agencies, consumers and families have recently become key customers for information in order to select health plans, make individual choices when determining needs and preferences for care, and advocate for needed services. The need for person-and system-level data has become more urgent as managed behavioral health care becomes the primary vehicle for monitoring and administering mental health services in many States and local communities. Data and information requirements under managed behavioral health care often are predicated on the needs of the payer. The extent to which these data are consistent with consumer and family demands for information is not completely clear. Even though consumers and families are involved in determining performance indicators and outcome measures for a system of care, the data that are collected generally are not based on customer needs, but on fiscal and political concerns. Although information needs of consumers and families vary according to geography, funding, availability of services, and the maturity of the mental health care system, the following list presents some of the common basic information needs of consumers and families:
What Are the Benefits of Decision Support 2000+ to Consumers and Families? With the large-scale changes in the organization of behavioral health care during the past decade, consumers and families would benefit from additional information on plan performance and organization. Key topics of great interest range from access, through appeals, to outcomes. In addressing these topics, Decision Support 2000+ (Minden et al., 2000) would be of great benefit to consumers and families through:
Reducing Fragmentation Too often, consumer and family advocacy groups have complained about fragmentation within and across mental health, substance abuse, and health care systems. As a result, consumers often receive services that are not based on and do not support a continuum of care, and do not attend to their long-term care needs. One example is a consumer who uses psychiatric services but who cannot obtain needed substance abuse services to address a drug problem. Fragmentation also occurs from a data and policy perspective. If the field is unable to collect uniform data on the service needs of people with mental illness and on the costs and outcomes of providing these services within and across care systems, policy makers cannot make informed decisions about mental health policy, and administrators cannot decide about resource allocation and planning. This lack of integrated and cross-system information to support integrated services and a continuum of care has a direct and lasting negative impact on the rehabilitation, recovery, and clinical goals of consumers and families. Managed care has enabled some States to track service use more effectively by population, region, and type of service offered. In some instances, quality measures are being used to ensure accountability at the local level. Such data can be used to advocate, plan for, and support the development of additional services and to earmark limited resources for services most preferred by consumers and families. The more comprehensive the data made available from an information system, the better they will reflect the full range of family and consumer service needs and preferences. One example of quality measures to ensure local accountability is the use of data to foster development of housing in a community where homelessness has become epidemic. Data on persons who are homeless and mentally disabled can be used to examine the linkage between the outcomes associated with improved housing and receipt of mental health services. Such data then can be used by advocacy groups to convince public officials to invest resources to design and develop housing options that meet the special needs of people with mental illness who are homeless. Fragmentation is a problem not only for the service system— it affects information systems as well. At present, information systems are fraught with problems that arise from disparate methods of data collection and noncomparable ways of measuring quality. Currently, there are many initiatives under way in the field that are designed to identify sets of performance indicators and outcome measures. While the number of such projects is impressive, have they served to perpetuate a segmented system for identifying needed information? Still, there are several efforts in States and at the Federal level to bring this work together, such as the summit on common performance measures that was held by the Survey and Analysis Branch of the Center for Mental Heath Services, SAMHSA. Promoting Accountability All State systems generally are guided by State planning processes, as required by the State Mental Health Planning Act (P. L. 106– 310). Within the framework of such plans, programs and services are outlined and priorities for funding received through the Community Mental Health Services Block Grant are identified. States now are required to track progress on implementing these priorities through the use of performance indicators. With performance indicators, Federal officials can more effectively monitor States' use of resources, and consumers and families can be positioned better to ensure that services proposed by States are implemented. Performance indicator data also can show how well the services meet consumer and family needs. Block grant funding also provides more flexibility to develop unique services that are tailored to local consumer and family needs. Because of its flexibility, the information system can include performance indicators for programs common to many States as well as performance indicators for programs unique to a particular State. Raising Standards of Excellence for Care There are currently no viable mechanisms to compare data on care and outcomes across State lines. In this respect, consumers, families, and advocacy organizations are hard-pressed to use data to compare managed care plans in regard to quality of care on a regional or national basis. Consumers and families who relocate may wish to base a move on the quality of care in another community. In addition, some consumers may find that it is more feasible to receive care in a neighboring State. Mobility is a reality for many consumers and families in today's society; care systems should adapt accordingly to ensure that services are easily available and that information about accessing services is provided. In order to raise the standards of excellence for care, we must be able to measure the quality of care provided by different plans and providers and compare the results. Many plans shift their priorities for measuring quality of care over short periods, often as a result of changes in the payers' priorities. If comparisons across plans are to remain meaningful in the face of such changes, standardized measures must be available for a wide range of quality indicators. From a policy perspective, consumers and families demand excellence, and they have not been convinced that a comprehensive approach is available to ensure that the highest quality and most cost-effective services are delivered. This fundamental "missing piece" of the system has promoted dependency on what exists rather than on what we should expect. If we have little or no information about the highest level of quality, we are not promoting quality of care— rather, we are promoting the status quo. Raising Standards of Excellence for Information Decision Support 2000+ undoubtedly will raise the bar for excellence for information across the field. Right now, data requirements tend to vary from State to State and, at best, are minimal requirements generated by public payers, regulators, and managed care plans. The requirements vary in their appropriateness and adequacy. As a result, consumer and family efforts to ensure that appropriate services are delivered and that information about such services is accessible and understandable are compromised. Clearly, the data and information industry will have to retool and adapt to the demands of these primary customers. Most mental health care systems are not able to address all the service needs of every person in a given community. In spite of these realities, consumers and families continue to advocate so that services are provided to those in need. A State-based planning process is one avenue where consumers and families have an impact in identifying unmet needs and effecting change in a State's policy for provision of care. Indeed, information is critical at all phases of the planning process. Advocates must have accurate counts of the number of people with particular needs in the communities to show where changes in provision of care must be made. After changes are instituted, advocates need the same kinds of data to determine whether the changes actually met the community's needs. Advocacy to expand services to populations in need also can lay the groundwork for expanding prevention and early intervention services. Although policymakers and administrators do not universally embrace prevention, data show that these services offset more expensive treatment (Goldston, 1998). Consumer and family advocacy organizations can be more effective at obtaining resources for pre-ention and need-based services if they have access to such information. Research that demonstrates cost offsets in a particular community is especially useful. Promoting Visionary Policy Development Information uniformity can enhance policy development and increase support for needed services and improved systems of care. Health care policy remains close to home— with individual State legislatures embroiled in the health care policy debate. The lessons we have garnered from State experiences now lay the framework for national action; uni-form information will be essential to implementation. Consumers and families are desperately seeking a common goal of improved outcomes, availability of and access to needed services, and hope for recovery. Consumer and family organizations have become the change agents in many States, pushing for parity and services. The paucity of services and the limited number of providers committed to serving people with severe mental illness, persons who are homeless, or individuals with mental illnesses who are incarcerated have led to problematic and controversial issues such as involuntary outpatient commitment. A strong advocacy movement must have access to data to press for change. Legislators are often the most impressed when advocacy organizations have a command of information to make a clear case for additional services or to argue for the closure of State-run institutions or programs. Without adequate and accurate data, such efforts to improve service systems is for naught. Even worse, advocacy efforts can have unintended consequences, such as reduction of a mental health budget or allocation of resources to other departments. State mental health administrators cannot make appropriate changes in response to advocates if data are outdated or incomplete. Current estimates of the number of uninsured Americans have fueled the debate over health care reform. Clear, simple numbers (data), such as these, help keep this issue on the front page of most newspapers and at the top of the agenda of the health care advocacy community. In the mental health field, shaping policy has become reactive rather than careful and strategic. This trend is exemplified by the resurgence of involuntary outpatient commitment proposals as a means to address the public's call for accountability following high-profile incidents of violence and tragic episodes involving people with mental illness. While a uniform information system is not a panacea, it will provide the field with the information it needs to think about the implications of short-term policy goals and plan more effectively for the future. Reinforcing the Link Between Service Delivery and Quality of Care Decision Support 2000+ finally may bring us closer to understanding the important link between service delivery and quality of care. These two areas have often been treated as separate colonies, with no direct link or only a remote relationship. Treatment guidelines, for example, are pivotal to determining what type of and for what duration clinical services should be provided to a consumer. A system for assessing quality not only must measure the clinical intervention provided, but also be able to measure whether the provider actually adhered to a guideline and whether application of the guideline resulted in improved outcomes for the consumer. Fidelity measures help us better understand what services consumers are actually receiving. If we ask consumers in a satisfaction survey how pleased they are with the services they received, but fail to ask whether other services are needed to meet their goals for recovery, then we are not measuring quality. By comparing the treatments provided with the guidelines, we can see what is missing that prevents recovery from being achieved. Guidelines are most useful, however, when they address all aspects of a person's functioning. Medication algorithms, for example, can tell us about newer and more effective psychiatric medications; but algorithms alone cannot tell us how psychosocial interventions should play a role in medication compliance or in improving level of functioning. Grievance and appeal data also play critical roles in determining the effectiveness of service delivery approaches and quality of care. This information has an important impact on a consumer or family's decision about services and plans, but behavioral health care organizations tend not to make such data available. Promoting Integrated Services and Integrated Information Systems Consumers and families have served as important stakeholders in the design of innovative services and the articulation of quality standards. These groups clearly see the value of linkages that need to be made across disciplines and systems. Uniform data and linkages across information systems support integrated systems of care; they also support the changes needed to bring such systems about. For example, accurate data on supportive housing will facilitate a consumer's reentry to the community from an institutional setting. In this regard, the mark of an excellent provider will be the extent to which he or she advocates for improved information linkages along with advocacy for integrated care. Providers' dedication to the concept of creating and supporting information ultimately will improve the quality of life among consumers. Likewise, the ability of consumer and family organizations to access such data will assist advocates in building additional community supports and other services. Promoting Competition and the Use of Consumer Report Cards A well-functioning information system will clear the way for more broadly based competition in the industry to provide a higher grade of services so that quality is at least equal to price as a determining factor. Too often, contracts are awarded solely based on price and not on standards for quality. While cost is an important issue in today's health care marketplace, it is not the overriding issue for consumers and families. In the instances where cost is placed high on the decisionmaking tree, the market loses the ability to allow consumers to drive the system. Consumers cannot choose among plans when the payer limits competition and bases competition largely on cost. In this respect, consumer choice is nonexistent. Choice among plans selected only on the basis of the lowest price is not choice. Quality competition needs to be included with cost competition; uniform and comparable information on performance indicators and consumer outcomes will facilitate this. The field has embraced the concept of consumer report cards. Although they are not yet widely used, research and development in this area has gained momentum. Ideally, report cards will serve as an incentive for plans to show improvement over time and in domains such as consumer satisfaction with services; provider satisfaction; costs to consumers and copayments; availability of specialists; factors of choice; complaint and grievance resolutions; and availability and accessibility of psychiatric medications. A "smart" consumer then will be able to make an informed choice among plans that goes well beyond cost considerations. What Are the Challenges of a Uniform Data and Information System to Consumers and Families? Some of the challenges consumers and families may face with the development of Decision Support 2000+ include guaranteeing informed consent, regulating access to medical records, expanding choice, and ensuring valid interpretation and reporting. As with all things, these concerns should not be obstacles to developing the system, but rather challenges that drive creative problem solving. Any major reform will come with technological, training, and startup difficulties. Change can take place only when plenty of mistakes have been made. An effective response by consumers and families to these challenges will form the basis for a well-designed and functional system. Weakened Informed Consent Informed consent is the basis for consumer participation in any research protocol, service, or innovative therapy. Unfortunately, this often is the only time consumers have a legitimate voice in their treatment. Consumers have a fundamental right to make informed choices about the services they may use in the beginning and over the course of their treatment. In addition, consumers may seek more control over their treatment at critical junctures, such as at a time when crisis occurs or in decisions pertaining to the selection of a specialist (e. g., trauma counselor). Consumers also have a right to know about and consent to data about them being collected, researched, and reported. Clearly, an accessible and multifaceted information system presents challenges to ensure that informed consent is obtained, adhered to, and appropriately administered. As we develop a uniform method for data collection and analysis, issues of consent must be addressed along with related issues of privacy and confidentiality. It has been difficult to develop a unique identifier that will allow access to information about a person and still ensure privacy and protect confidentiality. Restricting access to only those persons who need the information within a provider agency or MCO has been effective at stemming the flow of confidential information. Aside from the obvious implications for consumers and families, there are many issues associated with provider performance and adherence to standards for informed consent procedures. Policies and procedures need to be developed along with standardized and mandatory training for providers who regularly encounter these issues. Clinical training must also emphasize the importance of informed consent so that the next generation of providers will be adequately prepared. Ability to Access Medical Records Consumers and their families today face numerous challenges in accessing medical records. Consumers and families need their medical records to monitor ongoing treatment or when seeking redress from an institution that has allegedly been abusive. Specialized advocacy organizations, such as the protection and advocacy agencies that are charged with investigating incidents of abuse or neglect, must have ready access to medical records. Furthermore, ease of access to records and information is important to many consumers, as well as to ensure accuracy. It is time consuming and frustrating to repeat lengthy medical and psychiatric histories; with adequate privacy protections, histories could be readily available to whomever consumers choose to share them. While there has been a focus on the collection and analysis of aggregate data, there must be the ability to maintain notes and other data in a format that can be accessed by the consumer or family. The extent to which consumers and families can access medical records in this developing information technology environment is unclear. The system should be relatively straightforward and user-friendly— not only for researchers, providers, and managers, but also for consumers and families with little or no experience with data, computers, or oth qer technologies. Expanded Choices for Consumers and Families The key to developing and sustaining consumer choice in any system is to provide the vehicle for choices to be made. The information system itself is one such "vehicle"; within it, other "vehicles" are report cards and consumer outcome measures. Still others are clinical guidelines for treating depression, schizophrenia or other disorders; system guidelines for assertive community treatment; and flow charts describing models for disease management. Not only must all this information be reliable, but it also must be presented in ways that will be understood by consumers and families if they are to use it to make choices about plans, providers, programs, and overall quality. Realistically, the information system cannot meet every need; but it must, at a minimum, be able to translate complex data into practical and usable information for consumers and families to understand and make choices about key aspects of their care. Consumer and family advocacy organizations also will demand information on the progress and implementation of the information system. They will want to be assured that the domains that are most critical for their organizations are included in the information system. They expect to continue to be involved in the planning, development, and implementation processes so that their information needs are met and so that they can help monitor the system. Data Interpretation and Reporting An important step in implementing the information system prototype will be to identify stakeholders to interpret data and draw policy and research conclusions. From a theoretical standpoint, the ideal model will include consumers, families, and advocacy organizations, among others. Such a coalition is an essential ingredient in any decision-support system. Consumers and families are critical to successful and meaningful interpretation of information. They are the primary audience— and, as such, have a unique ability to bring data to the attention of policymakers, legislators, and others concerned with systems improvement. They can communicate easily in lay terms and explain the implications of information to their constituents and to the public. Experts in the field can capitalize on these special skills and know-how by including consumers and families in activities involving analysis and interpretation of data. Consumers and families can help make sense of data by using their own experiences to explicate a finding. A consumer who has been homeless, for example, might be particularly helpful in trying to understand and explain why homeless persons do not access traditional services. A consumer may understand the system's intricacies that are often so elusive to analysts who do not use services. Family representatives know first-hand the problems involved in obtaining services. Consumer and family organizations have become more familiar and respectful of the need to collect and analyze data for improved information. Their expertise and direct interest in system improvement makes them both noteworthy and essential participants in the process to understand and shape policy through the use of data and information. All efforts to interpret, report, and analyze data must ensure that the information is accessible to consumers of all levels of education, all cultures, all languages, and all levels of capacity for understanding. In addition, information should be available in alternative formats and via computer as appropriate. Conclusion: Prevent the Loss of Individuality The act of establishing a new information system presents us with the chance to think in "big picture mode." There likely will be broad and much needed policy advances as a result of Decision Support 2000+. In many respects, this project presents the field with a unique opportunity to reach beyond our current capabilities to a future bright with change and improvement. Clearly, this project has far-reaching possibilities. No matter how far we reach, however, we cannot forget the people who will be affected by this major paradigm shift. Consumers' and families' abilities to shape treatment plans, appeal or file grievances, choose providers, or refuse treatment must not be affected adversely by the development of an information system. Consumers' and families' relationships with providers in no way should be diminished by the implementation of such a system. With the promise of improved information comes numerous opportunities for the field. We must be vigilant in our efforts to ensure that such advances will not prevent consumers and families from reaching their goals for treatment and recovery. References Goldston, S. E. (1998). Cost analysis and primary prevention: A sound idea whose time has come. Journal of Mental Health, 7(5), 505–518. Minden, S. L. (Ed.), Davis, S., Ganju, V., Guidera, S., Hale, C., Hernandez, M., Kaufman, C., Mazade, N., Noonan, D., Rich, T., Rosenthal, M., Trabin, T., Van Tosh, L., & Webman, D. (2000). Draft requirements analysis for Decision Support 2000+. www.mhsip.org |
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