13
Information Technology

Coordinator


Jim Karkanias, Microsoft


Other Contributors


Michael Gillam, Microsoft, and Nina Schwenk, Mayo Clinic

SECTOR OVERVIEW

Medicine is often viewed as a procedure or intervention-based practice. Although they are often unnoticed by the patient, the information systems used to store relevant patient information work in tandem with providers to deliver appropriate treatment options to patients. Information systems that were initially developed by gathering limited patient demographic and financial data have, in many cases, expanded to include volumes of complex clinical findings, laboratory data, and images. With the significant increase in patient data volume and complexity, healthcare data management is increasingly more challenging. Data management is central to supporting evidence-based medicine. The information technology (IT) sector, a key driver in moving the frontier of evidence-based medicine (EBM), continues to seek opportunities to work with stakeholders to address the complex needs of the healthcare industry.

The IT sector will play a critical role in progressing toward a learning healthcare system that facilitates evidence-based decisions based on experiential clinical data. As a key player in the healthcare arena, the IT sector has evolved from delivering stand-alone, smart medical equipment (e.g., echocardiography systems and radiology systems) to providing increasingly integrated clinical systems and full-function electronic medical records (EMRs) (Table 13-1). The ability to provide clinical decision support at the point of care is a key need in health care, and IT sector solutions for EMRs have resulted in a variety of complex and evolving systems that healthcare



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13 Information Technology Coordinator Jim Karkanias, Microsoft Other Contributors Michael Gillam, Microsoft, and Nina Schwenk, Mayo Clinic SECTOR OVERVIEW Medicine is often viewed as a procedure or intervention-based practice. Although they are often unnoticed by the patient, the information systems used to store relevant patient information work in tandem with providers to deliver appropriate treatment options to patients. Information systems that were initially developed by gathering limited patient demographic and financial data have, in many cases, expanded to include volumes of complex clinical findings, laboratory data, and images. With the significant increase in patient data volume and complexity, healthcare data management is increasingly more challenging. Data management is central to supporting evidence-based medicine. The information technology (IT) sector, a key driver in moving the frontier of evidence-based medicine (EBM), continues to seek opportunities to work with stakeholders to address the complex needs of the healthcare industry. The IT sector will play a critical role in progressing toward a learning healthcare system that facilitates evidence-based decisions based on expe- riential clinical data. As a key player in the healthcare arena, the IT sector has evolved from delivering stand-alone, smart medical equipment (e.g., echocardiography systems and radiology systems) to providing increasingly integrated clinical systems and full-function electronic medical records (EMRs) (Table 13-1). The ability to provide clinical decision support at the point of care is a key need in health care, and IT sector solutions for EMRs have resulted in a variety of complex and evolving systems that healthcare 09

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0 LEADERSHIP COMMITMENTS TO IMPROVE VALUE IN HEALTH CARE TABLE 13-1 Healthcare System IT Functions Function Description Source system Supports patient data management, administrative and claims data, system of record EMR Consolidated and integrated clinical systems provider that supports inpatient and outpatient practices Administration chain Administrative systems in support of clinical care and research data management Personal health record Provides an interface to providers and hospitals for patients, employers, and insurance companies Ancillary service Systems designed for use in specific functional areas (e.g., management laboratory, radiology, outpatient care, and care management) Decision support Educational tools, data warehousing, enterprise information management, and data analysis professionals can use to communicate important information quickly and efficiently. Despite the significant advances in healthcare IT, work remains to be done to meet the needs of a learning healthcare system. Focused efforts in data warehousing and the development of data analysis tools will enhance the healthcare system’s ability to work with large data volumes and images. Allowing patients and providers to search and access data in various forms through the Internet or mass storage will further enhance the delivery of patient care by the use of evidence-based practices. ACTIVITY CATEGORIES Evidence-Related Activities Areas for IT Development The following are evidence-related activities in IT: improving consumer access to reliable health and disease manage- • ment information, improving provider access to reliable health and disease manage- • ment information, improving patient-provider communication and interaction, • improving the application of best practices, • improving provider operational effectiveness and efficiency, • improving the ability to manage and analyze large quantities of • data, and improving research on clinical effectiveness and quality of care. •

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 INFORMATION TECHNOLOGY Priority Areas for IT Development Seven priority areas will be able to improve the IT sector’s ability to support the transformative change implied in the Roundtable’s goal. The priority areas range from the development of data standards and a vocabu- lary that will allow the sector to incorporate data and look at data from different views to developing capabilities to deliver evidence-based medicine at the right time and the right place. Healthcare IT Standards The single most transformational step toward achieving the goal of a learning healthcare system is the development and implementation of IT industry standards. This step, more than any other IT initiative, would facilitate the exchange of patient data between clinical IT systems as well as between the spectrum of stakeholders. Even with highly sophisticated clinical systems, the exchange of data between providers and particularly between institutions is complicated by the incompatibilities between pro- prietary systems and a lack of defined standards in the healthcare IT arena. The impetus to create and standardize data elements will need to come from the IT industry. IT consumers, such as healthcare organizations and providers, will increasingly demand intraoperability between systems as the digitization of clinical information and the use of electronic media in medical offices increases. Beyond individual patient care and data transfer- ability, the accumulating public and population data efficiently necessitate interoperable systems that are suitable for a single-physician practice as well as large multispecialty academic organizations. Anonymous tracking of disease epidemiology, drug interactions, and various complications will facilitate active, concurrent biosurveillance, postmarketing drug reviews, and general public health safety. Standardized Vocabulary In conjunction with health IT standards, the healthcare system demands a common vocabulary to facilitate the interoperability of clinical systems and the interpretation of clinical data across multiple sites. The IT sector must collaborate with the medical community to standardize the vocabu- lary. Precise definitions of medical procedures, events, illnesses, and data parameters and values are mandatory for comparison of information from single patient encounters with different providers as well as encounters with different patient cohorts. Standardization initiatives must be prioritized and approached methodically. For instance, a standardized approach to the medication record and a standardized allergy vocabulary might quickly

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2 LEADERSHIP COMMITMENTS TO IMPROVE VALUE IN HEALTH CARE change the healthcare industry’s ability to influence the quality of care, patient safety, and morbidity and mortality from medication administra- tion errors. Provider Work Flow Current clinical IT systems often simply duplicate work flows devel- oped and honed in the paper world. The ability to transform the delivery of medical care will require fundamental changes in how providers and clini- cians deliver care and communicate with IT. The electronic health records of the future will not only provide a way to collect, view, and communicate patient data but also will transform care delivery workflows to be safer and more effective. A critical piece of this work flow transformation will need to be the seamless movement of data between the various patient care environ- ments. Both virtual and real patient visits will require the same degree of data and information management. Just-in-Time Evidence Delivery The volume and complexity of the data requiring aggregation, synthesis, and interpretation in patient care delivery are already beyond the techno- logical capabilities of individual physicians. The ability to put complex data in the context of relevant scientific evidence adds a further dimension to the complexity of safe and appropriate patient care delivery. To continue supporting clinical care, IT will need to deliver the right information at the right time to ensure that the best decisions can be made in partnership with patients. The just-in-time delivery of evidence will ultimately require con- sumers to be able to gather information on demand about the care provider and his or her level of expertise on any particular topic and for providers to be able to gather information on the potential and real medical condi- tion of the patient, relevant clinical evidence and preformed guidelines, and genomic data and their interpretation. Equally important will be the ability to filter unnecessary data to avoid overwhelming providers with an abundance of information. Clinical Decision Support The elements of clinical decision support for providers span the con- tinuum of data collection, aggregation, synthesis, delivery, and interpreta- tion. IT can supply relevant aggregated clinical and experiential evidence data to guide clinicians faced with clinical and biological data from indi- vidual patients. Clinical decision support rules are complex and require the flexibility to respond to changing clinical evidence and learning. Any

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 INFORMATION TECHNOLOGY such clinical decision support also needs to be integrated with electronic health records to minimize the number of systems that need to be accessed. A notable function of clinical decision support is alerting providers to a significant patient care event. Alerts can include information on possible drug interactions, medication administration times, and notable events in a patient’s history (e.g., history of patient fall precautions, allergies, and details of advance directives). Simplifying alert mechanisms could reduce adverse outcomes and enhance the delivery of evidence-based care. Similar to clinical decision support, alert functions correspondingly require integra- tion with provider work flow and clinical systems. Flexible Data Views As the complexity and volume of data increase, simple tables and statistics will not provide an adequate view of the available information. Novel ways of displaying clinical data and their relationship with other data will need to be developed to help users interpret the significance of those relationships and make appropriate and informed patient care deci- sions. Data visualization needs significant honing and work before the data can be applied to the healthcare arena. Such techniques have already been demonstrated to have value in the financial planning and gaming industries. Connectivity Healthcare networks that connect various stakeholders are needed for the seamless transfer of relevant and appropriate information to avoid the duplication of data collection efforts and the recollection of data. Minimiz- ing the sources and the number of data inputs also increases the likelihood of data integrity and reliability. The collection and display of clinical data from all patient care settings are needed for the reliable, consistent, and safe transfer of data. Technology and vocabulary standards will again come in to play if healthcare providers make use of all patient information collected, whether it is through the use of home monitoring devices or in-hospital medical devices. LEADERSHIP COMMITMENTS AND INITIATIVES The IT sector can champion three transformational initiatives to facili- tate the development of a learning healthcare system. The initiatives provide overlapping benefits to the aforementioned priority areas and are efforts that harness and align existing elements, encourage measured innovation in the near future, and ultimately sustain long-term radical innovation.

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 LEADERSHIP COMMITMENTS TO IMPROVE VALUE IN HEALTH CARE Foundational Medical Informatics Ecosystem Initiative The single most transformational step toward achieving the goal of a learning healthcare system would be enhanced development and implemen- tation of IT industry standards and common vocabularies in the healthcare system. As its goal, this initiative would seek to build and promote the foundational technologies needed to enable healthcare IT-assisted EBM. There are a variety of foundational technologies involving the government and different groups, but deficits remain in those foundational technolo- gies. One of the most important remaining deficits is standards. Standards and a common vocabulary are of absolute importance as building blocks for bringing computational intelligence to aid human cognition as it relates to EBM. The IT itself can be a barrier to utilization. For example, the National Library of Medicine purchased SNOMED CT (Systematized Nomenclature of Medicine—Clinical Terms) for $25 million and subsequently provided public access. The public access spurred innovation in multiple areas, but difficulties within the SNOMED CT vocabulary prevented full clinical use by healthcare IT firms such as Microsoft and Azyxxi to the extent that SNOMED CT cannot be used commercially. This is illustrated in the follow- ing examples of lexical variants and lexical and domain deficits: Lasix is sanofi-aventis’ trade name for the U.S. generic drug • furosemide. In the United Kingdom, where SNOMED CT was developed, the drug is identified as frusemide but not as furosemide or Lasix. Lexical issues such as this are of great clinical frustration to users trying to enter patient medications. Clinicians can order skin tests for patients for a variety of differ- • ent allergies, but many systems omit documentation of test results, which is an easy fix. Unfortunately, this lexical deficit results in an incomplete allergy list. Although patients could be allergic to any medication, not every medication is always included in the allergy list. Some natural language-parsing tools (e.g., MetaMap Transfer • from the National Library of Medicine) can be used to evaluate unstructured text, look for key words, and then map the text to a particular standard. However, if the key word is “chest pain,” these tools will also pick up “no chest pain” and the results will include patients who did not have chest pain or who denied having chest pain. In light of these gaps, transformation will require an impetus for recti- fying deficiencies to create a foundational medical informatics ecosystem.

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 INFORMATION TECHNOLOGY Ecosystems represent both a community and a technology, creating a virtu- ous cycle. The more members who join that particular community and use a technology, the more valuable the created technology becomes. eBay is an example in which increasing numbers of people list items and even more people visit the site; it becomes more valuable to put more goods on the site. Such a transformational initiative creates an ecosystem for standards, vocabularies, and tools. Likely, the first area to be targeted would be an evaluation of the technical barriers preventing healthcare IT firms from using the current tools, identification of the barriers, and creation of an impetus for the IT industry to evolve and implement these standards. IT Core Measures Initiative Clinical data and an analytic infrastructure are necessary to facilitate the development of EBM. Important to every evidence-based decision is the availability of patient data, collected during consultation and interviews with individual patients. However, the variety of add-on clinical systems almost seems designed to thwart efforts to aggregate patient data and to organize those data for the practice of EBM. Hospitals use multiple docu- mentation, order, billing, and clinical systems; and these often exist as “data islands.” The excessive proportion of time that clinicians spend collecting evidence has huge implications for encouraging the practice of EBM. To illustrate the potential for IT to improve the current situation, imag- ine a system in which all of those data are stored in one table. This has huge implications for entities aiming to meet the Joint Commission on the Accreditation of Healthcare Organizations and Centers for Medicare and Medicaid Services core measures requirements. In some cases, 15 or 20 dif- ferent systems will be accessed just to collect the data to confirm compliance with the core measures. In fact, some hospitals have four and five full-time employees who just walk around collecting all these data on paper. The proposed IT Core Measures Initiative could help transform health care by promoting the implementation of an important information infrastructure that would encourage the development of additional measures. There are a variety of core data essential to supporting the practice of EBM. Identifying specific data elements through Institute of Medicine (IOM)-facilitated initiatives might increase the receptivity of the IT industry to the integration of critical information into clinical systems as well as the demand by clinicians for the information. The development of core analyti- cal tools supporting data analysis and allowing clinicians to draw evidence- supported conclusions will advance the adoption of EBM. IT could provide flexible reporting and enhance the ability to visualize clinical data in a variety of formats, thereby increasing the likelihood of rapid adoption and application to the delivery of care. Furthermore, it will be important to

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 LEADERSHIP COMMITMENTS TO IMPROVE VALUE IN HEALTH CARE make the data available to other IT systems through data sharing, with the aim of developing additional clinical insights. Advanced Technical Strategies Innovations Initiative Finally, innovation needs to be pushed in many of the different priority areas, for example, clinical decision support, just-in-time evidence delivery, alerts, and flexible data views. How can systems currently deemed impossi- ble be developed? How can systems that guide clinical decisions on the basis of individual clinical and biological data with relevant clinical evidence and experiential information gathered from the mining of data on previ- ous patients with similar conditions be developed? To get to these types of innovations that will truly enable the delivery of EBM, the IT sector needs to leapfrog what it is doing today and bring about radical innovation. Although the Advanced Technical Strategies Innovation Initiative project is oriented around issues related to the IT sector, it will actually require substantial cross-sector collaboration, as, often, the key to radical innova- tion is diverse participation. To establish an infrastructure to incentivize ongoing innovation in EBM, IOM or other entities could sponsor, support, or establish healthcare IT demonstration projects for advanced, strategic EBM projects that are currently nearly impossible but ultimately extremely valu- able. The American Medical Informatics Association or other groups need to be involved to help attract attention; but the core idea is that sponsorship of a contest could lead to multiplicative return on investment, knowledge from doing, diverse participation, and potentially radical innovation. Opportunities for Cross-Sector Collaboration On the basis of the perspectives shared by the participants in the dif- ferent sectors (healthcare delivery organizations, insurers, employers and employees, healthcare product developers, regulators, evaluators and clini- cal investigators, healthcare professionals, and patients and consumers), the IT sector has identified several areas for potential collaboration. In addition to working with other sectors to develop stronger IT solutions, the IT sector suggests that projects designed to further develop the depth of IT solutions be funded as a critical element of collaboration (Table 13-2). NEXT STEPS Foundational Medical Informatics Ecosystem Initiative In conjunction with other stakeholders, the IT sector can support the establishment of a data and analytical infrastructure to enable the

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 INFORMATION TECHNOLOGY TABLE 13-2 Areas Identified for IT Collaboration Across Sectors rs ato ns atio rs stig ope niz nve r cto vel rga ls al I ona Se De ees ry O nic ers ssi uct loy Cli e um rofe eliv rod mp nd ons eD eP eP s/E rs a rs ts/C car car car yer ato ato rs alth alth alth plo tien ure gul alu Em Ins He He Re He Pa Ev Secure data sharing across multiple platforms to reduce x x x x x x x x redundancy and errors Health information exchange/data warehouse /aggregated x x x x x x x data x x x x x Standardized data field definitions/terminology High cost of new technology, lack of cost-effectiveness x x x x Elements of IT Use Cases scrutiny or use in comparative clinical analysis Ready access to individual personal health data/EHR for x x x x improved quality of care/increased patient par ticipation x x x x Incorporates administrative and clinical data and images New IT must engage users, facilitate decision making x x x based on preferences/needs, and fit users’ culture Postclinical trial/postmarket surveillance of x x x interventions, devices, and drugs Capacity to analyze /organize /retrieve/display/disseminate x x x data usefully Data privacy concerns/IT skepticism slow the adoption of x x new technology x Flexible system/software enhancements and upgrades TABLE 12-2 application of EBM. Through collaborations with the IOM and others, the development of clinical IT standards through a government–industry collaborative ecosystem will foster the continued evolution of EBM. As the clinical standards are developed and adopted, feedback on the standards will increase and the standards can adjust to meet the needs of the users. The virtuous cycle—one that continually feeds outputs back into the cycle as inputs—inherently leads to equilibrium within the medical informatics ecosystem, as seen with eBay, Flickr, and YouTube, and the technology works in harmony with the community. Support for the evaluation of the technical barriers to adopting current publicly supported open-standard vocabularies and tools by healthcare IT providers will enable the IT sector to iteratively address and remove technical barriers. Ultimately, success is measured by technology adoption and use by the healthcare community.

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 LEADERSHIP COMMITMENTS TO IMPROVE VALUE IN HEALTH CARE IT Core Measures Initiative Establishing an infrastructure will create incentives for ongoing inno- vation in EBM. To accelerate progress, the IOM or others could convene or support initiatives identifying metrics for core measures that address accessibility to core clinical data and core analytical tools, which may include reporting of specifications and the use of data visualization tools to facilitate research in areas such as disease variation and potential evolving drug resistance patterns in particular diseases. Advanced Technical Strategies Innovations Initiative Developing cross-sector collaboration through an Advanced Technical Strategies Innovations Initiative sponsored, supported, or established by the IOM could lead to projects that demonstrate advanced, strategic EBM applications. It is through projects with diverse participation by multiple sectors that radical innovation in healthcare IT will grow. As a starting point, key needs for IT development have been drawn from the accompany- ing strategies of each sector. As illustrated in Table 13-2, the cases are not intended to be comprehensive in nature; however, they provide examples of scenarios in which innovation in healthcare IT can further contribute to systems development. Patients and Consumers Representatives from patient and consumer stakeholder groups encour- age healthcare IT to increase their access to patient-controlled information sources, including medical records, clinicians, and clinical data, as well as an ability to use IT as a means of communicating and participating in the planning of their care. Specific IT enhancements might include secure data sharing and protection, access to multiple data sources, an ability to access personal medical information, a standardized healthcare data vocabulary, tools for communicating with healthcare professionals, and IT cost containment. The priority areas identified by the patient and consumer groups include data security and individual patient control of data and data sharing, access to clinicians, and the interconnectivity of healthcare records. Patients and consumers want to designate various levels of medical record access to individuals autonomously, and the security of data storage and transmission are of paramount importance. In addition to using IT to communicate with clinicians on their health status and treatment options, patients and con- sumers want easy access to a consolidated, user-friendly health record for routine and emergency health needs.

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9 INFORMATION TECHNOLOGY Several transformative initiatives could aid in developing the prior- ity areas identified: advocate for the better capture of clinical data to accelerate evidence development, particularly on late effects and effects on the general population after an initial demonstration of efficacy in con- trolled clinical trials; collaborate on development in EMRs and IT systems that promote patient safety, patient control and use, secure data sharing that protects patient privacy and that prevents wasteful duplication and avoidable administrative costs; demand interoperable records so that key participants in the delivery of an individual’s care can share information (e.g., primary care clinicians, specialists, pharmacies, laboratories, imaging facilities, hospitals, nursing homes, home health agencies); highlight the value that IT provides consumers; and resolve privacy concerns to promote trust in IT and the acceptance and use of IT by consumers. Healthcare Providers and Healthcare Delivery Organizations Healthcare providers and healthcare delivery organizations suggest that the healthcare IT sector develop systems that are user-friendly, highly integrated, and interconnected and that allow clinicians to spend more time with patients and access the aggregated clinical information. Specific IT enhancements might include the provision of access to all clinical data sources; a standardized healthcare data vocabulary; tools for communicat- ing with other healthcare professionals; and increased ease of system use, training in system use, user interface development, and system upgrades. Providers highlight several areas required for the rapid adoption of evidence-based practices. Clinicians want easy access to clinical and research data to aid them with the planning of care. The availability of user interfaces and the facility with which clinicians interact with systems may increase the rate of technology adoption. As healthcare delivery organiza- tions shift toward the use of electronic records, the IT sector should con- sider how it can support organizations when they want to move to digital formats beyond their financial means. To advance the application of evidence, clinicians need to remain cur- rent on additions to the evidence base. The IT sector could support the endeavor by providing easy and immediate access to Internet-based knowl- edge repositories. The IT sector might also consider the implementation of multiple pricing structures to ease the burden on small practices, as the perceived initial investment in IT can be significant. Through the devel- opment and implementation of a common healthcare IT vocabulary and interoperable technology, patient data can be optimized for the assess- ment of evidence-based guideline implementation and provide feedback to healthcare professionals. Providers also suggest that the provision of evidence-based guidelines in a format compatible with all forms of EMR, as

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20 LEADERSHIP COMMITMENTS TO IMPROVE VALUE IN HEALTH CARE well as in paper versions for practitioners who do not yet use routinely elec- tronic technology, may speed their adoption and integration into practice. Clinical Investigators and Evaluators Clinical investigators and evaluators suggest a need for a healthcare IT system that allows access to data from multiple platforms to support the generation of evidence and the capacity to analyze, organize, display, and disseminate data usefully. Specific IT enhancements might include informa- tion from data collected concurrently during the routine delivery of care to assess outcomes, prevention strategies, and treatments; tools designed to aggregate and analyze data efficiently; patient outcomes reporting to empower patients to enter treatment outcomes data; and biobanking ini- tiatives to improve the collection and storage of tissue samples and genetic data. Support for the development of database architectures and gover- nance procedures addressing privacy needs and proprietary interests could support the application of evidence in the research setting.