Clinical Data as the Basic Staple of Health Learning Creating and Protecting a Public Good: Workshop Summary (2010) / Chapter Skim
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per capita healthcare costs are now nearly double that of comparable nations (Health care spending in the United States and OECD countries, 2007) , and broader access and use of existing and future clinical data may be a key opportunity to better understand and address system-wide factors -- such as waste and inefficiencies -- that contribute to rising healthcare expenditures.
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In evaluating the current marketplace for care data, participants presented opportunities to increase access to and sharing of health information as private and public goods, while devoting particular attention to legal and social aspects of privacy and security of healthcare data. The workshop addressed multiple health-sector perspectives in the identification of specific policy areas for developing strategies and next-generation health data systems.
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Roundtable participants established a goal that, by the year 2020, 90 percent of clinical decisions will be supported by accurate, timely, and up-to-date clinical information and will reflect the best available evidence. Central to this goal is the development of a learning health system designed to generate the best evidence for the collaborative healthcare choices of each patient and each provider; to drive the process of discovery as a natural outgrowth of patient care; and to ensure innovation, quality, safety, and value in health care.
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Each workshop is summarized in a publication available through the National Academies Press. Workshops and publications in this series since 2006 include: • The Learning Healthcare System • Judging the Evidence: Standards for Determining Clinical Effectiveness • Leadership Commitments to Improve Value in Health Care: Find ing Common Ground • Redesigning the Clinical Effectiveness Research Paradigm: Innova tion and Practice-Based Approaches • Clinical Data as the Basic Staple of Health Learning: Creating and Protecting a Public Good • Engineering a Learning Healthcare System: A Look at the Future • Learning What Works: Infrastructure Required to Learn Which Care Is Best • Value in Health Care: Accounting for Cost, Quality, Safety, Out comes, and Innovation • The Healthcare Imperative: Lowering Costs and Improving Outcomes -- A Four-Part Workshop Series This publication summarizes the proceedings of the sixth workshop in the series, Clinical Data as the Basic Staple of Health Learning: Creating and Protecting a Public Good.
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COMMON THEMES Apart from shedding light on the issues that impede or challenge improved data utility, the discussion identified a rich array of ideas for accelerating progress toward better application of data. Across the 2 days of presentations and discussion, a compelling set of reoccurring themes emerged for follow-on attention.
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Patient demand could be instrumental in spreading the availability of electronic health records for improving patient care and knowledge development. Such demand will depend on 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 pro vider-maintained electronic medical record.
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• The development of a vehicle to enhance collaboration among larger EHR users of different vendors was raised during the workshop as a means to accelerate the emergence of more standardized agreements and approaches to integrating and sharing data across multiple plat forms, common query strategies, virtual data warehousing rules and strategies, relational standards, and engagement of ways to reduce misperceptions on regulatory compliance issues. The business case for expanded data sharing in a distributed • network.
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David Brailer's presentation profiled current clinical data collection and use, and offered his perspective on future applications that would improve care delivery, research, and health outcomes; and Carol Diamond offered her perspective on what might be possible if data were treated as a public good and identified several policy and technical issues important to achieving this vision. Clinical Data as the Basic Staple of the Learning Health System Brailer, Chair of Health Evolution Partners, was appointed in 2004 as the first national coordinator for health information technology.
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A second major challenge is ensuring that information developed via data sharing efforts are truly useful to clinical care -- and in this respect, there is a major tension between adoption and interoperability. Interoperability -- or the capacity to share, integrate, and apply health information from disparate sources -- has been the principal priority of the nation's health information agenda.
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Achieving population health goals requires analysis, decision support, and feedback loops embedded throughout the system. However, as revealed by the significant challenges of collecting, cleaning, and analyzing health data for existing data reporting demands, progress will require a new approach to collecting, accessing, and using health information.
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The manuscripts in Chapter 2 reflect opportunities present within the current healthcare data profile to assess and manage clinical outcomes, as well as to glean new healthcare insights through the use of data from public and private sources. Current Healthcare Data Profile When discussing elements associated with evidence-based medicine or when defining the data or the taxonomies regarding health and health care, the healthcare community does not always consider all of the potential effects on health.
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Recognizing that transparency is very important to consumers, the NCVHS recommends that individuals should be able to request and be given information about the specific uses and users of their data. The NCVHS also suggests that data stewardship principles should be extended to include personal health data held by non-covered entities in personal health records (PHRs)
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Encrypted patient identifiers, mechanisms for facilitating patient privacy, make it difficult to provide patient-specific feedback to physicians. Ideally, clinical claims and personal data would be integrated for quality improvement; Rabson cited important work at the national level by the American Health Information Community toward this goal to define how health information technology can effectively support quality improvement.
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Although some examples demonstrate that it is possible to incorporate rigorous and prospective data collection into routine clinical care, most clinical data are not collected at the point of care in a manner that is easily retrievable later. Access to data varies.
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Marder from Thomson Healthcare Administrative identified three major types of data used by public and private entities to market healthcare products and services: health survey data, information about general consumption patterns, and administrative data generated by the healthcare delivery system. Much of the information about patient/consumer attitudes comes from health survey data (private and public)
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Changing the Terms: Data System Transformation in Progress Building on workshop discussion that described the current landscape of clinical data, several presentations explored the evolution of the national data utility by highlighting efforts to coordinate clinical data -- through large linked sets, aggregated data, and registries -- and to make medical care data more readily available and usable. Speakers described incentives and drivers that push this evolution -- including integration dynamics and disincentives, including shortfalls, limitations, and challenges of various approaches to organizing and aggregating data.
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In short, caBIG is a possible model or prototype for the broader challenge of creating an interoperable health information network across the nation. Networked Data Sharing and Standardized Reporting Initiaties Research questions today are more complex and data more complicated.
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These models are seen as valuable tactical tools that are available now to advance clinical data sharing. Large Health Database Aggregation Steven Waldren, director of the Center for Health Information Technology at the American Academy of Family Physicians (AAFP)
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. The largest of three distinct databases that comprise the STS National Database, the ASCD is a voluntary clinical registry developed for the purpose of continuous quality improvement in cardiac surgery.
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Characteristics of a Public Good and How They Are Applied to Healthcare Data As understanding theoretical principles can help guide the development of practical policy and action, David Blumenthal, director of the Institute for Health Policy at Massachusetts General Hospital/Partners Health System, reviewed the classic definition of a public good and discussed how this definition applies to health information under varying circumstances. Pure public goods cannot be traded efficiently in the marketplace, he suggested, because they are both nonrival, meaning that using this good does not preclude others from using it, and nonexcludable, meaning that, even if a good is wholly owned and paid for, its use and benefit by others cannot be prevented.
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Blumenthal concluded that the question of data is complex, and that nuanced information uses will arise that require public guidance, perhaps on a case by case basis. Characteristics of the Marketplace for Medical Care Data Various sources of medical and prescription drug data are available to support safety surveillance and generation of evidence for healthcare decision makers.
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These include the perceived mandate to create or support structures that treat clinical data as a private good; the design of data protection laws to eliminate or reduce potential negative externalities of data sharing on the data subjects; and the uncertainty inherent in the legal system -- an indeterminacy increased by the legion of "legacy laws," such as records laws predating electronic clinical data collection and the potential for data mining of records to improve outcomes and effectiveness. Three major clusters of legal rules that
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Terry argued that a more rigorous data protection model will be required as a predicate for greater access to patient data, noting that, as stated by NCVHS, "erosion of trust in the healthcare system may occur when there is divergence between what individuals reasonably expect health data to be used for and when uses are made for other purposes without their knowledge and permission." Examples of efforts to confront what he described as "a tension between data protection and public utility" include the National Center for Health Statistics' stewardship framework report and the European data directive. Healthcare Data as a Public Good: Privacy and Security In addition to proprietary issues, concerns related to privacy and security restrict the use of healthcare data.
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The results also suggest that a new code of privacy confidentiality and security written into legislation might support new health information technology and the adoption of EHR systems. In addition to encouraging models of voluntary patient control privacy policies offered through repositories of personal health records such as Microsoft's HealthVault and Google Health, Westin suggested the need for an independent health privacy audit of the verification process.
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Because HIPAA is so often used as a smokescreen to preclude the sharing of data, a more difficult challenge in policy discussions will be separating out and defining for the regulators and legislators what the real problems are regarding data sharing. Wilder suggested that HIPAA as it stands today may be somewhat outdated.
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Healthcare providers may find HIPAA privacy and security requirements confusing, and health information data custodians and researchers may have limited awareness of HIPAA's data access and disclosure requirements. Furthermore, even when access and disclosure are permitted under HIPAA, the willingness to make certain disclosures of identifiable information may be impeded by physician concerns related to violating the trust of their patients, minimum necessary standards, accounting for disclosure obligations, and even concern about losing patients to physician/researchers.
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The chapter concludes with a summary of comments on emerging, practical opportunities to align policy developments with improved data access and evidence development offered by a discussion panel of key policy makers. Building Blocks for the Next-Generation Public Agenda Important strategic priorities for the development of an architecture for a next-generation data utility emerged from workshop discussion of collaborative models that offered insights into collaborative clinical data system management, and suggested a framework for expectations, purposes, incentives, priorities, structures, roles and responsibilities, and principles for data entry, access, linkage, and use.
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He also discussed the impact of current privacy regulations, based on work to prototype the Nationwide Health Information Network, in which researchers aimed to aggregate data from 15 completely separate organizations in four states. Among the challenges to optimizing the use of data, both in patient care and for secondary uses, is getting the data into equivalent standards and terms, and finding ways to draw data into one repository from multiple systems.
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; and we lack data sharing for basically solving problems and finding cures or better treatments for various health problems. In the end, however, Steuerle encour
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Government could also provide more incentives for participation in clinical trials. Steuerle also sug gested that people working in the public sector need incentives to encourage data sharing.
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This understanding has developed into an expectation of wide data sharing in molecular biology and molecular genetics. Now that powerful genomewide molecular methods are being applied to populations of individuals, the necessity of broad data sharing is being brought to clinical and large cohort studies.
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Although most guidelines are currently available on paper, the vision is to have clinical decision support integrated into EHRs. The ACC's National Cardiovascular Data Registry (NCDR)
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The ACC believes wider adoption of data sharing via registries is within reach, should be encouraged, and would ultimately result in better health care overall, but that strategies need to be developed and implemented that foster systems of care versus development of data collection mechanisms specific to a single hospital. Toward the development of business strategies needed to develop the clinical decision support capacity, standardization, and interoperability, the ACC wants to collaborate with other medical specialties, EHR vendors, the government, insurers, employers, and other interested parties.
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Although significant amounts of product development data are required by law to be in the public domain, roadblocks prevent the effective sharing of clinical data. In the area of clinical trials posted on www.clinicaltrials.
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In terms of legislation covering data sharing, we need to make sure that whatever policy is developed moves things in an agreed-upon direction that does not create new obstacles and barriers. A first step will be to develop a much better understanding of what barriers exist in the states and federal government to aggregating data for research, quality improvement, and similar goals.
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The public has not yet been brought up to that level, and more is needed to engage consumers in this enterprise. Engaging the Public The final session of the workshop examined the public's role in improving the clinical data utility, considering how the public currently views the use of clinical care data for research, what types of information the public is interested in deriving from such research, and how that interest might influence public response to future developments in the use of health information.
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Generating interest in electronic access to personal health information might help overcome market obstacles related to sequestering data for proprietary interests. However, Rein suggested that until greater regulation is put in place to compel providers and healthcare institutions to share data appropriately, use of clinical data for the public good will remain constrained.
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Hudson discussed how this service addresses the intersection of an individual's need for information, access, and transparency with the U.S. healthcare system's desire for population-based research and data sharing in light of modern data management and data-sharing capabilities.
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CLINICAL DATA AS THE BASIC STAPLE OF HEALTH LEARNING: IDEAS FOR ACTION The availability of timely and reliable evidence to guide healthcare decisions depends substantially on the quality and accessibility of the data used to produce the evidence. Important information about the results of different diagnostic and treatment interventions is collected in multiple forms by many institutions for different reasons and audiences -- providers, patients, insurers, manufacturers, health researchers, and public agencies.
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6. Transparency and access to federal data: Explore the marketplace for data, opportunities to enhance data sharing, governance/ stewardship issues, and ways to make federally sponsored clinical data widely available for secondary analysis.
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2003. Building the national health information infrastructure for personal health, health care services, public health, and research.
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