Learning What Works Infrastructure Required for Comparative Effectiveness Research: Workshop Summary (2011) / Chapter Skim
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3 The Information Networks Required
3 The Information Networks Required
Pages 153-190
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From page 153... ...
Design and development of robust information networks, and efforts to foster collaboration around common work, will therefore be a critical aspect of creating the infrastructure for expanded CER -- necessary for the generation and application of evidence alike, as well as for providing opportunities to support learning from clinical practice. In addition to the federal efforts to increase the adoption and use of electronic health records as described previously, many organizations have developed such capacities, and drawing upon these and other resources through systematic, linked, and coordinated networks would greatly enhance the nation's fundamental capacity to generate evidence.
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From page 154... ...
Work is also needed to develop the technical capacity, methods, standards, and policies for the efficient exchange of information from EHRs and other data sources (e.g., administrative databases, clinical registries) and to disseminate evidence syntheses and other resources to guide practice.
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From page 155... ...
interview data from research conducted on behalf of the 2007–2008 California Governor's Health Information Technology Financing Advisory Commis 1 Personal health records constitute a separate set of capabilities that consumers could use to view and act on data from various sources, including from the EHRs that hospitals and physician organizations use.
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From page 156... ...
Hospital Sector Clinical Information Systems What's Needed and What's Been Adopted Table 3-1 contains a brief description of hospital CIS (EHR) capabilities and adoption, using a stages-of-CIS adoption schema used by the Health Information Management Systems Society (HIMSS)
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From page 157... ...
, physician documentation, and robust capability for health information exchange. American Hospital Association (AHA)
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A crude estimate of hospital sector CIS capital costs can be created by multiplying the number of staffed U.S. community hospital beds by the estimated cost per hospital bed of implementing robust CIS capabilities, and then subtracting the proportion of the CIS capital cost already incurred.
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From page 159... ...
3 In fact, the total "new" CIS costs would be somewhat higher, since any new CIS capital expenditures create new capital replacement (depreciation) costs and new operating costs -- for software maintenance, additional information systems, clinical staffing, and so on.
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From page 160... ...
use electronic data from billing, scheduling, registration, and lab systems, plus manually entered data, to create paper patient data summaries and reminders for visits, along with lists of patients needing services and provider performance reporting. In this setting, CDMS software coexists with the paper medical record.
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From page 161... ...
Provides relevant data at the point of care Reminders (paper) On the paper data summaries Lists of patient needing services Permits outreach to patients overdue for tests or visits Provider performance reporting Enables managers and providers to understand Quality Improvement performance Electronic Health Records Replaces paper chart; best ones also replace chronic disease management systems Prescribing Permits drug–drug/allergy interaction alerts; reduces input errors Lab ordering Reduces input errors Documenting Best products have templates for types of patients Messaging with providers Improves provider communication Messaging with patients Improves patient–provider communication; best products enable patients to view data, order prescriptions, make appointments AND Patient data summaries Provides relevant data during visit; enables customizable views Reminders Typically built into documenting and ordering Lists of patient needing services Permits outreach to patients overdue for tests or visits Provider performance reporting Enables managers and providers to understand Quality Improvement performance SOURCE: Derived from Miller et al., 2009b.
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From page 162... ...
In the physician sector, absent any special CIS subsidies, financially weaker organizations would fall behind in CIS adoption, a special concern when some of those organizations also serve the disadvantaged and underserved. based on D
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From page 163... ...
Obtaining such data requires promulgating precise definitions of measures and methods of obtaining data, but enforcing such standards would be especially difficult to achieve given the wide variation in EHR and billing software, physician documentation and data validation practices, and data from health information exchange -- all of which could affect the quality of CER measures. Increasing EHR use and especially EHR use for quality improvement will depend on a series of substantial changes in out-of-the-box EHR software, government and payer financial incentives, public performance reporting, EHR support services, and improved health information exchange.
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From page 164... ...
HIT holds great promise in accelerating both the research needed and its dissemination in order to bring about a learning health system. Indeed, it is arguable that the greatest promise of HIT lies in its ability to enable networked analysis -- or the rapid learning via a networked and distributed approach to information sharing and evidence development about what works and what does not work in clinical care.
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From page 165... ...
Using these approaches, a different kind of "research" emerges. Instead of relying solely on the assembly of research data in large databases in centralized research centers where the data are analyzed over months and years by scientists outside of everyday healthcare delivery, networked information and distributed analytic tools make it possible for clinicians and patients to answer their real, practical questions in real time in order to make better decisions.
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From page 166... ...
Most important to consider, however, is that the model lacks what is essential: connectivity and feedback loops. Only with networks to connect the fragmented knowledge base and the capacity to use feedback loops will it be possible to meet the goals of a learning health system: to get information when and where it is needed to make better decisions.
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What would it mean if not just clinicians but also patients were involved in driving research? What if patients could bring their own very real and pressing questions and unique information about treatments, symptoms, and disease progression to networked health information?
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LEARNING WHAT WORKS Articulate New, Broadly Accepted Working Principles Based on 21st-Century Information Paradigms As illustrated in the examples above, it is important to acknowledge and leverage the characteristics of the 21st-century environment in which the needs for sharing and accessing information are increasingly distributed. As consumers, physicians, and others increasingly use the Internet to create, access, and use health information, the traditional paradigms are changing dramatically.
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From page 169... ...
The distributed research network is an example of a distributed model for comparative effectiveness research.8 In this model, supported by the Agency for Healthcare Research and Quality (AHRQ) , multiple types of information sources, including administrative data, EHRs, inpatient data, and disease registries, are leveraged across a federated system that will allow for composite data analysis without requiring the aggregation of all the raw data in a single centralized database.
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Core Privacy Principles The nine core privacy principles, summarized below, are based on U.S. Fair Information Practices.
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• These attributes have guided the work in developing detailed policies and technology approaches for health information exchange and for services that enable consumers to access their own health information. The Connecting for Health common framework has been developed and adopted by providers, insurers, e-health companies, consumer groups, and privacy experts (Connecting for Health, n.d.c)
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Types of Evidence Synthesis Many different approaches have been taken in designing evidence syntheses -- with significant variations in the methods used, their complexity, and the reproducibility of their results. Several examples exist in the United States.
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examples, the focus is on relatively complex evidence syntheses, which attempt to synthesize evidence over a broad domain. By contrast, the majority of evidence syntheses produced in the United States and elsewhere are systematic reviews with a much more narrowly targeted focus.
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. Because of their complexity and costs, only a handful of these complex evidence syntheses are produced each year.
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Systematic reviews may also have an advantage over complex syntheses in their generalizability, since complex reviews are more likely to include consideration of factors, such as costs, availability, and other issues that vary from setting to setting. Because evidence syntheses of all sorts may become invalidated when new evidence appears, there is general recognition of the need for periodic updating of these documents.
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. Thus the need for prioritization is very different when viewed from the perspective of focused systematic reviews than when considering complex evidence syntheses.
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From page 177... ...
Even if an existing review does not address the exact question needed for the complex synthesis, or if it is in need of updating, the detailed specification of search strategies and results included in high-quality systematic reviews, along with their critical appraisals of the studies included in the review, can give developers of complex reviews a head start and decrease the time needed to produce their reviews. A Combined Approach to Focused and Complex Evidence Syntheses Given these advantages, plans to increase support for evidence syntheses in the United States should recognize the need for both components -- a targeted program of complex syntheses supported in a very directive fashion accompanied by more general efforts to build a diffuse network of skilled producers of focused systematic reviews that can be used as building blocks for guidelines and complex syntheses.
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From page 178... ...
The Cochrane Collaboration The Cochrane Collaboration is an international network with the aim of improving healthcare decision making, by producing and regularly updating systematic reviews synthesizing the results of these controlled clinical trials. Approximately half of the 16,000 people in over 90 countries who work with the Cochrane Collaboration are review authors, but there are many additional roles that are filled by organized subgroups of the collaboration known as "entities," of which there are four different types: Cochrane review groups provide the editorial role for Cochrane reviews and support authors in a variety of ways, including their search for evidence to include in the review.
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From page 179... ...
No review can begin until the title has been approved by the relevant Cochrane review group. This avoids the duplication of effort that would result from different teams unknowingly working on different Cochrane reviews on overlapping topics and ensures that the planned scope of each review fits well with others in the Cochrane Library.
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From page 180... ...
and reviews that synthesize research on issues relevant to systematic review methodology. The Cochrane approach of producing a coordinated database of focused systematic reviews using an international collaborative process has a number of advantages and has been an effective way to build capacity for evidence synthesis in the countries participating in this effort.
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From page 181... ...
These individual study registers are assembled quarterly into CENTRAL, which is then published as part of the Cochrane Library to make it available for broader public use by health researchers and others wishing to perform evidence syntheses. Approximately two-thirds of the references in CENTRAL are derived from specially designed searches of MEDLINE and Excerpta Medica Database (EMBASE)
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From page 182... ...
The ability of the Cochrane Collaboration to simultaneously increase the available number of systematic reviews and to improve and build the infrastructure required to support production of evidence syntheses of all types has led several countries to build support for the collaboration into their budgets. The majority of this support has been directed toward funding of Cochrane infrastructure (for example, support for Cochrane Review Groups)
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From page 183... ...
Advantages of a Collaborative International Approach to Evidence Synthesis The example of the Cochrane Collaboration demonstrates the many advantages of an organized international approach to the production of evidence syntheses, and the benefits it brings in terms of prioritization, methods development, and capacity development. This section explores these issues in more detail and also notes other international collaborative approaches, some of which involve more complex evidence syntheses.
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. Additional Examples of International Collaboration in Evidence Synthesis A number of groups other than the Cochrane Collaboration have now begun to organize evidence syntheses using an international collaborative model.
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Future Directions While the examples just listed show some beginning steps toward international integrated vehicles for evidence synthesis, there is much still to be done. Some of the additional needs include continued advancement in methods, particularly for complex evidence synthesis or syntheses involving designs other than RCTs; continued improvements in the quality of evidence syntheses; and improved coordination so as to decrease unnecessary duplication of effort.
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From page 186... ...
Given the current state of methods development for evidence syntheses, it is clear that at least some of the funding for comparative effectiveness studies in the United States should be directed to promotion of further advances in methodology. While this funding could take the form of increased support for existing organizations within the United States, there would be clear advantages to align these efforts with international groups that are performing similar work.
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From page 187... ...
and to leave many gaps. These gaps can and will continue to be filled by focused systematic reviews and other evidence syntheses produced in the United States and in other countries.
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-- -- -- . n.d.c Connecting for health common framework for networked personal health information: Statement of endorsement.
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From page 189... ...
2009b. Barriers to financing clinical information systems in California healthcare delivery system organizations: Report to the Governor's Health Information Technol ogy Financing Advisory Commission.
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From page 190... ...
2008. Using exist ing systematic reviews in complex systematic reviews.
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