科研之友
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摘要
Background People with serious mental illnesses have benefited from consumer advocacy, dissemination of recovery-promoting practices, and state and federal reforms such as parity and legal protections. At the same time, many people continue to experience significant disability that may affect cognition and their ability to engage and interact with others, guide and adhere to treatment, and navigate successfully within institutions and systems. Despite recent efforts to improve the quality of care for this diverse group, vexing challenges remain. These include the difficulties of changing the focus of care from acute symptom control and relapse prevention to long-term, recovery-focused care, coordinating care among different providers, and adapting interventions to different settings with multiple, fluctuating funding streams. Both the Patient Protection and Affordable Care Act and numerous state initiatives have strong potential to improve patient-centered outcomes if corresponding patient-centered measures are developed and implemented. These reform efforts present important opportunities for researchers to evaluate alternative delivery models and to integrate service users into the process of developing both services and patient-centered outcome measures. The primary goal of this report is to provide the background and theoretical framework necessary to shift the focus of existing care systems and research programs away from short-term clinical outcomes and toward long-term, recovery-focused outcomes that are patient-centered and can be used to facilitate learning within health systems. Our primary audience includes researchers, funding agencies, and policy makers, although this report may also be of interest to clinicians and service users. Approach We worked with stakeholders (payers, providers, service users, and consumer advocates) and technical experts to develop a definition of "care delivery intervention" for individuals with serious mental illnesses, a theoretical model of a care system to serve this population, and an analytic framework and key questions to guide future research. We also conducted a narrative review to illuminate the complexities that must be addressed when considering system change. Finally, we used the model of care, analytic framework, and narrative review to identify patient-centered measures and metrics, key research questions, and high leverage points in the system-those places where a small amount of change-related effort is likely to produce large results. Results Definition of Care Delivery Intervention. Recognizing the key roles of the mental health consumer movement, autonomy, and choice in the shifting climate of medical and mental health care, we defined "care delivery intervention" based on several foundations of patient-centered care and services: (1) a focus on the outcomes most important to service users, (2) collaborative partnerships focused on care solutions that build strong consumer-provider relationships, (3) ongoing exploration of service users' reasons for seeking or ending care, and (4) ongoing provision of information relevant to the service user and the consumer-provider dyad. Theoretical Model of Care: A Learning Service System for Individuals With Serious Mental Illnesses. The theoretical model of the care delivery system was developed to be a learning system that (1) is patient centered and patient directed to the greatest extent possible; (2) encompasses services beyond those typically provided in clinical or medical settings; (3) recognizes the dynamic nature of service users' needs and desires over time, thus includes ongoing assessment and adaptation of services; and (4) is responsive to feedback and functions, with the goal of continuously improving service delivery and patient-centered outcomes. Analytic Framework to Guide Future Patient-Centered Outcomes Research and Comparative Effectiveness Research. The analytic framework, intended to guide and highlight opportunities for research that evaluate all components of a mental health system, contains six key topic areas: (1) resource acquisition and distribution; (2) populations served; (3) the delivery system, including delivery structures, organizations, and providers; service packages; and delivery methods and characteristics; (4) patient-centered outcomes; (5) delivery system and provider performance measures; and (6) feedback systems and methods. Narrative Review. The components of our narrative review, developed in collaboration with stakeholders and experts, corresponded to the six primary domains of our analytic framework noted above. The findings from our review informed key questions for comparative effectiveness and patient-centered outcomes research. Stakeholder Perspectives Our research review led to several key conclusions about stakeholder perspectives: 1. Consumers, families/carers, and providers predictably diverge in their assessments of consumer needs for services, and in their assessments of consumers' status and outcomes. 2. Demonstrable progress has been made in engaging stakeholders in evaluating treatment and services and in formulating federal, state, and local policy. Organization and financing models, however, are often taken as inevitable and trump many of the expressed opinions and evidence from these groups and individuals. 3. The most commonly agreed upon needs of stakeholders include choice, respect for persons, safety and material living needs, and competence of care. 4. Processes of collaboration in consumer-provider relationships are complicated and easier to imagine than achieve. 5. The unintended consequences of treatment receive scant attention in outcomes research. As a result, services and systems lose the opportunity to be self-correcting, learning systems. 6. People come to health and mental health systems with a variety of beliefs about the nature, causes, and consequences of mental illness. Cultural competence requires recognition of such differences. Service User and Carer Involvement in System Design and Redesign, Research and Evaluation, and Development of Patient-Centered Outcomes Collaboration in constructing knowledge and assessing outcomes of treatment and services is central to a patient-centered system of mental health services. Consumers possess knowledge, skills, and conceptual frameworks that are needed in the research process. Such resources are essential to determining which questions are posed, the methods used for data collection and analysis, and the ways in which results are interpreted. Resource Acquisition and Distribution Resources for providing services to people with serious mental illnesses are largely acquired and distributed through the public sector and, in particular through state Medicaid programs, which vary significantly in terms of funding, benefits, and delivery organizations. Overall, these financial structures have resulted in cost savings to states and private health plans, reductions in out-of-pocket costs for consumers, reductions in emergency department use, and increased crisis referrals. There is significant variation, however, in outcomes, suggesting that the details of the financing structures are important. Care and Service Delivery for Individuals With Serious Mental Illnesses: Structures, Service Packages, Delivery Methods, and Delivery Characteristics Evidence exists for a number of methods and characteristics of care delivery systems and services that are necessary, if not sufficient, to achieve improved patient-centered outcomes for people with serious mental illnesses. Existing reviews, however, underscore the need for better definitions and constructs as well as methodologically rigorous research using measures that are validated for this heterogeneous population. Patient-Centered Quality Improvement in Mental Health, System and Provider Performance Measures, and Methods of Feedback To improve the patient centeredness and quality of services provided to individuals with serious mental illnesses, we have proposed a patient-centered learning system of care that adapts to feedback over time. We reviewed six types of quality improvement activities for potential use to promote system learning and adaptation: (1) electronic health records (EHRs) and health information technology, (2) audit and feedback procedures, (3) pay-for-performance, (4) public reporting of performance data, (5) implementing patient-centered, evidence-based practices and guidelines, and (6) process-improvement initiatives. Evidence is weak for the effectiveness of most of these initiatives in medical settings, and little is known about their impact in behavioral health settings. Feedback System and Methods for a Learning System Despite national calls for significant health system changes, the last two decades of health care reform and quality improvement efforts have produced, at best, slight to modest improvements in outcomes for individuals with serious mental illnesses. Complexity science offers an alternative approach to understanding and improving systems. Although there is a large and varied literature on this topic, only some of this has been tapped by health care and mental health services researchers. Discussion and Conclusions Despite recent efforts and improvements in approaches to service delivery, we have encountered many conflicts and disconnects while producing this report-between the type, structure, and funding of services and the needs of consumers; between the processes of service delivery across settings and over time; and between traditional clinical outcome measures and the outcomes favored by the individuals receiving care. There are also significant disconnects between the perspectives of providers, families/carers, researchers, and consumers. Thus, we were faced with the difficult task of developing innovative and emergent approaches to reduce the disconnects described above, building upon and gleaning as much useful information as possible from a research base with pervasive flaws. As a result, this report has no doubt perpetuated some of these same flaws. With that caveat in place, we offer a brief summary of our most important conclusions: 1. We lack sufficient outcome measures that have been developed by or in concert with service users, or evaluated rigorously by service users. Development of these measures is crucial and should be a primary aim of mental health research in the near future. 2. Information regarding the outcomes that service users value the most and least remains limited. Developing a clear and representative understanding of the most common values among service users, cultural differences within and across these values and understanding the full range of these values, should be a primary aim of the next generation of mental health services research. 3. Some attempts have been made to link individual outcomes to service packages, service characteristics (eg, continuity, therapeutic relationship), and performance measures, but consistency within and across outcome measures is lacking, and the measures used are fraught with problems when viewed from a patient-centered perspective. The mental health system needs feedback methods based on new patient-centered outcomes that are causally linked to services, processes, and structures. 4. To more appropriately target changes in processes of care and institutional structures that affect outcomes, we must link patient-centered outcomes to process- and structure-related measures. 5. There is a great need for patient-centered measures that can be aggregated for use at the organizational and system levels, as well as research developing effective methods for providing feedback using aggregated data. 6. More research is needed to compare the relative effectiveness of the many interventions that have been developed for individuals with serious mental illnesses. Such studies must include real-world patients with complex problems. 7. Financing of care and services are complicated and structured in ways that prevent coherent, coordinated, and integrated service delivery. Health care reform is providing rare opportunities for researchers to compare innovative methods of organizing and financing care. 8. As in other areas of the health care system, stake-holders may value and desire services that are not effective; strategies, policies, and methods are needed for managing and communicating the results of comparative effectiveness research in such situations. 9. In the context of systems, information alone is not adequate to produce system changes, although it is essential to the redesign process. Complexity science provides an alternative perspective regarding the factors that are likely to produce changes in systems (eg, organizational culture) and improvements in the outcomes those systems produce. 10. New methods and collaborative processes are needed to resolve the inherent tension between the needs and perspectives of researchers, quality improvement managers, policy makers, clinicians, and consumers. We challenge comparative effectiveness and patient-centered outcomes researchers to develop methods that incorporate the perspectives of service users for unique and individualized assessment, intervention, and outcomes. At the same time, researchers must produce the evidence necessary to allow the mental health care system to improve the services it delivers to individuals with serious mental illnesses and the outcomes those services seek to address. The opportunities associated with health care reform are many, and business as usual, with its incremental efforts to improve outcomes, is no longer possible. Researchers, administrators, policy makers, and clinicians are at a crossroads. It is time to take on the challenge of producing learning systems that can provide real patient-centered and patient-directed care to individuals with serious mental illnesses.
- 出版日期2014-1
