Patients Charting the Course Citizen Engagement and the Learning Health System: Workshop Summary (2011) / Chapter Skim
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Appendix D: The Learning Health System Series: Workshop Common Themes
Appendix D: The Learning Health System Series: Workshop Common Themes
Pages 283-311
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From page 283... ...
Appendix D The Learning Health System Series: Workshop Common Themes 1. VISION The Learning Healthcare System Adaptation to the pace of change: continuous learning and a much more dynamic approach to evidence development and application, tak ing full advantage of developing information technology to match the rate at which new interventions are developed and new insights emerge about individual variation in response to those interventions.
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From page 284... ...
Universal electronic health records: comprehensive deployment and effective application of the full capabilities available in EHRs as an essential prerequisite for the evolution of the learning healthcare system. Tools for database linkage, mining, and use: advancing the potential for structured, large databases as new sources of evidence, including issues in fostering interoperable platforms and in developing new means of ongoing searching of those databases for patterns and clinical insights.
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Uncertainty exposed by the information environment: An irony of the information-rich environment is that information important to clinical decision making is often not available, or is provided in forms that are not relevant to the broad spectrum of patients -- with differing levels of health, socioeconomic circumstances, and preferences -- and the issues encountered in clinical practice. This is due to too little clinical effectiveness research, too poor dissemination of the evidence that is available, and too few incentives and decision supports for evidence-based care.
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Promise of health information technology: Electronic medical records (EMRs) and clinical data registries offer tremendous potential both to generate new evidence and to augment randomized clinical trials.
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From page 287... ...
In addition, although our assessment of can didate interventions is primarily through pre-market studies, the opportunity for dis covery extends throughout the lifecycle of an intervention -- development, approval, cover age, and the full period of implementation. Counter inefficiencies in timeliness, costs, and volume: Much of current clinical effectiveness research has inherent limits and inefficiencies related to time, cost and volume.
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How might existing research be more systematically summarized; or, different research methods organized, phased, or coordinated to add incremental value to existing evidence? Promote the notion of effectiveness research as a routine part of practice: Taking full advantage of each clinical experience is the theoretical goal of a learning healthcare system.
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From page 289... ...
The more patients understand and communicate with their caregivers about the evolving nature of evidence, the less disruptive will be the frequency and amplitude of public response to research results that find themselves prematurely, or without appropriate interpretative guidance, in the headlines and short-term consciousness of Americans. Build toward continuous learning in all aspects of care: This foundational principle of a learning healthcare system will depend on system and culture change in each element of the care process with the potential to promote interest, activity, and involvement in the knowledge and evidence development process, from health professions education to care delivery and payment.
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Personal records and portals that center patients in the learning process: Patient demand could be instrumental in spreading the availability of electronic health records for improving patient care and knowledge development. Such demand will depend upon much greater patient access to, comfort with, and regular use of programs that allow either the maintenance of personal electronic health records or access through a dedicated portal to their provider-maintained electronic medical record.
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From page 291... ...
Assuring publicly funded data for the public benefit: Federal and state funds that support medical care, as well as support insights into medical care through clinical research grant funding, are the source of substantial clinical data; yet, many participants observed that these resources are not yet effectively applied to the generation of new knowledge for the common good. Broader semantic strategies for data mining: Platform incompatibilities for clinical data substantially limit the spread of electronic health records and their use for knowledge development.
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Learning about effectiveness must continue beyond the transition from testing to practice: Pre-market testing for the safety and effective ness of various interventions cannot assess the results for all populations or the circumstances of use and differences in practice patterns, so gathering information as interventions are applied in practice settings should represent a key focus in designing the infrastructure to learn which care is best. Timely and dynamic evidence of clinical effectiveness requires bridging research and practice: Although historical insulation of clinical research from the regular delivery of healthcare services evolved to facilitate data capture and control for confounding factors, it may not adequately inform the real-world setting of clinical practice.
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Developing and applying tools that foster real-time data analysis is an important element: The scope and scale of evidence needs suggests that innovation is needed across the range of research methods, from making clinical trials faster and less expensive, to moving beyond randomized trials to better address practical circumstances. To take advantage of health information technology, statistical tools, and analytic algorithms that can be embedded in databases to allow real-time insights will be important.
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From page 294... ...
Approaches to developing this shared learning environment discussed include the direct involvement and support of the patients' and population's roles in the generation of knowledge through the incorporation of user-generated data; under standing the benefits of information use in patient care and population health improve ment; and improving patient access to health information to allow for a more active role in care decisions.
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Grounding the approach to coordination and integration of the digital infrastructure for the learning health system in the principles of a ULS system approach was suggested by several workshop participants from the computer science community. The term "ultra-large-scale system" refers to the existence of a virtual system of unprecedented scale and complexity, working from multiple platforms and used by multiple participants and stakeholders with cross-cutting common purpose at some level -- e.g., improving health and health care.
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This approach is in line with strategies under consideration for use of metadata for wrapping individual information packets to facilitate interoperability and health information exchange, in which a primary focus would be on development of the metadata standards. Keep use barriers low and complexity incremental: Similarly, incentives for broad participation in the digital infrastructure by all stakeholders was discussed as a crucial factor to its success.
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7. SYSTEMS ENGINEERING Engineering a Learning Healthcare System: A Look at the Future Center the system's processes on the right target -- the patient: Patient-centered care was defined in the 2001 IOM report Crossing the Quality Chasm as providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clini cal decisions.
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Participants cited the need to bridge the gap between dependence on formal trials, such as randomized clinical trials, and the experience of local improvement, in order to speed learning and avoid impractical costs. Emphasize interdependence and tend to the process interfaces: A system is most vulnerable at links between critical processes.
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8. PATIENTS & THE PUBLIC Patients Charting the Course: Citizen Engagement and the Learning Health System Listening: Each patient encounter starts with the patient's voice fully drawn out on issues, perspectives, goals, and preferences.
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Since the sequencing of the human genome was accomplished, medical science has sought to personalize treatments and standards of care. This effort challenges the traditional approach of giving the highest priority to evidence gathered by means of large randomized controlled clinical trials, in which treatments are measured in a large population with a diverse genetic profile.
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Effective teams are aided by an appropriate information technology infrastructure, which facilitates efficient and effective communication of health information, as well as by collaborative organizational systems, from medical homes to accountable care organizations. Efficient: Patients, their families, and clinicians should expect care to be appropriate to need, resources, and time required.
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Yet one presenter noted that, even in the face of information that 50,000 to 90,000 deaths per year are caused by medical errors, health care lacks the basic trust elements of transparency and accountability needed to drive improvements in quality and safety. In a learning system that draws lessons from each care experience, public trust must be bolstered in all aspects of the healthcare enterprise: equitable access to reliable clinician knowledge and skills, safeguards on clinical processes, privacy and security of medical records, and validity and safety of clinical trials.
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Drivers of the problems Scientific uncertainty. Clinical evidence development is not keeping pace with new diagnostics, treatments, and insights into individual variation.
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Lack of patient involvement. The culture of care is not yet conducive to active patient participation in care decisions, despite growing use of webaccessible information and evidence of the positive effect of shared decision making on health outcomes.
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Use electronic health records to enhance the effectiveness and efficiency of care, facilitate patient handoffs, provide clinical decision guidance, and foster patient involvement. Data that are protected but accessible for continuous learning.
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From the supply side, the right price is a function of the cost of production, the cost of delivery, and the incentive to innovation. Gain: Because reliable information is the starting point for improving value, discussants underscored the importance of adequate transparency and continuous improvement of insights on the safety, efficacy, effectiveness, and comparative effectiveness of interventions.
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Workshop discussants offered insights into the use of various financial approaches to sensitize and orient patient decisions on healthcare prices according to the evidence of the value delivered. Manufacturers: Health product manufacturers and innovators naturally focus on their profitability but because product demand is also derived from the ability to demonstrate advantage with respect to outcomes and efficiency, manufacturers expressed an interest in regulatory and payment approaches that enhance performance on outcomes resulting from product use.
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Identify the priorities for evidence development: The first step to a systematic and coordinated effort to conduct the most important assessments is the identification of the priorities as a sort of consensus national problem list and research agenda of the most pressing issues for medical care decisions. Improve the level, quality, and efficiency of the research: Policies that facilitate the ability to use clinical data to monitor the effectiveness of in
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A trusted information source -- one that is independent but that engages all stakeholders -- is needed to identify gaps; set priorities; establish standards; and guide the development, interpretation, and dissemination of evidence on clinical effectiveness. Build the capacity to meet the demand: Currently, the combined resources of the various public and private organizations involved in studying comparative clinical effectiveness meet but a small and scattered fraction of the demand.
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From page 310... ...
; and the linkage of purchaser and payer decisions to performance incentives for best practices, outcomes, and the better secondary use of routinely collected data. Accelerate advances in health information technology: Health information technology can facilitate the development of learning networks and accelerate the generation of evidence, enable data aggregation and utilization, deliver evidence to the point of care, and expand research capacities.
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