An architecture for research computing in health to support clinical and translational investigators with electronic patient data

ObjectiveObtaining electronic patient data, especially from electronic health record (EHR) systems, for clinical and translational research is difficult. Multiple research informatics systems exist but navigating the numerous applications can be challenging for scientists. This article describes Architecture for Research Computing in Health (ARCH), our institution’s approach for matching investigators with tools and services for obtaining electronic patient data.Materials and MethodsSupporting the spectrum of studies from populations to individuals, ARCH delivers a breadth of scientific functions—including but not limited to cohort discovery, electronic data capture, and multi-institutional data sharing—that manifest in specific systems—such as i2b2, REDCap, and PCORnet. Through a consultative process, ARCH staff align investigators with tools with respect to study design, data sources, and cost. Although most ARCH services are available free of charge, advanced engagements require fee for service.ResultsSince 2016 at Weill Cornell Medicine, ARCH has supported over 1200 unique investigators through more than 4177 consultations. Notably, ARCH infrastructure enabled critical coronavirus disease 2019 response activities for research and patient care.DiscussionARCH has provided a technical, regulatory, financial, and educational framework to support the biomedical research enterprise with electronic patient data. Collaboration among informaticians, biostatisticians, and clinicians has been critical to rapid generation and analysis of EHR data.ConclusionA suite of tools and services, ARCH helps match investigators with informatics systems to reduce time to science. ARCH has facilitated research at Weill Cornell Medicine and may provide a model for informatics and research leaders to support scientists elsewhere.     

AMIA Advocates National Health Information System in Fight Against National Health Threats

To protect public health and national safety, AMIA recommends that the federal government dedicate technologic resources and medical informatics expertise to create a national health information infrastructure (NHII). An NHII provides the underlying information utility that connects local health providers and health officials through high-speed networks to national data systems necessary to detect and track global threats to public health. AMIA strongly recommends the accelerated development and wide-scale deployment of electronic public health surveillance systems, computer-based patient records, and disaster-response information technologies. Such efforts hold the greatest potential to protect our citizens from disaster and to deliver the best health care if disaster strikes.To protect public health and national safety, AMIA recommends that the federal government dedicate technologic resources and medical informatics expertise to create a national health information infrastructure (NHII). An NHII provides the underlying information utility that connects local health providers and health officials through high-speed networks to national data systems (e.g., Centers for Disease Control and Prevention) necessary to detect and track global threats to public health.In the short term, this means adapting existing information systems to facilitate public health surveillance and emergency response. To establish a permanent infrastructure, AMIA strongly recommends the accelerated development and wide-scale deployment of electronic public health surveillance systems, computer-based patient records, and disaster-response information technologies. Such efforts hold the greatest potential to protect our citizens from disaster, and to deliver the best health care if disaster strikes.While meeting the acute needs of today, this initiative will begin laying the groundwork for a NHII that will continue to serve the health needs of the nation—a lasting endowment for future generations. Establishing an NHII requires thoughtful strategic planning and strong inter-agency leadership. Work on key components of the NHII must begin immediately. These key components include:

• Strategic planning and coordination. There must be a central coordinating entity that can quickly inventory existing public- and personal-health initiatives and develop a strategy to fashion a national system to protect Americans against health threats of various types, including biological, chemical, nuclear, and physical. The short-term strategy must be part of a framework for a permanent infrastructure that serves public health, patient care, and research.
• Connectivity and communications. Local, regional, and national coordination cannot exist without efficient, instantaneous communication. Public health services must be linked using secure connections to the Internet as an immediate top priority. AMIA recommends federal government funding to guarantee high-speed, dedicated access to the Internet for all public and private health care facilities and related organizations. Minimum-level workstations should be required, and adequate tools and training should be provided.
• Standards. Effective communication among local, community, state, and federal facilities require the use of standards. Health care messaging standards should be used for data interchange. A common vocabulary standard and required data elements for public health surveillance databases are required to enable effective sharing of data. Without a common vocabulary, data from local systems cannot be analyzed to detect emerging health threats. Government coordination and support for consensus standardization and low-cost distribution of common vocabularies for health event detection, prevention, and intervention are a fundamental aspect of an NHII.
• Resource databases. An up-to-date, central, Internet-based health resources directory containing information about available resources—knowledge, physical, and human—is vital to providing the timely information needed to manage any public health crisis. The national health resource directory would include information about physical resources, such as health care organizations, safety facilities, and environmental agencies; human resources, including physicians, nurses, and public health and support personnel; organizational resources, such as emergency medical services, county and city law enforcement agencies, and other emergency-response groups; and knowledge resources ranging from clinical guidelines to extensive clinical decision support algorithms related to threat vectors. Local health authorities must be trained in use of the directory to effectively derive maximal benefit when responding to national health threats.
• Public health surveillance systems. Effective public health practice and decision making depend on timely information, much of which is not readily available. Information about patients with clinical conditions of public health importance, symptoms compatible with prodromes of serious infection or exposure, health behaviors, and environmental risk factors must be collected, transmitted, aggregated, analyzed, and utilized for prompt decision making. Whether the health threat is biological, chemical, or nuclear, early detection and rapid response are essential. Existing public health systems in place and under development should be adapted to meet the current needs. Implementation of public health system initiatives such as the National Electronic Disease Surveillance System and Health Alert Network must be accelerated to meet the acute threat posed by bioterrorism.
• National identifiers. National identifiers for providers, insurers, businesses, and individuals are required by the Health Insurance Portability and Accountability Act (HIPAA) of 1996. The privacy provision of HIPAA that protects confidential health information has been finalized. In the face of the acute crisis, the work on identifiers should be accelerated so that effective epidemiologic data can be gathered and analyzed and appropriate health care services delivered where needed.

AMIA is an organization of professionals who operate at the interface between health care and computer and information science. Our leadership and members are capable and willing to contribute to solving the acute situation while laying the foundation for a lasting infrastructure to manage health information for the benefit of patients and the public.TANG, National Health Information System Proposal     

The Informatics Response in Disaster, Terrorism, and War

The United States currently faces several new, concurrent large-scale health crises as a result of terrorist activity. In particular, three major health issues have risen sharply in urgency and public consciousness—bioterrorism, the threat of widespread delivery of agents of illness; mass disasters, local events that produce large numbers of casualties and overwhelm the usual capacity of health care delivery systems; and the delivery of optimal health care to remote military field sites. Each of these health issues carries large demands for the collection, analysis, coordination, and distribution of health information. The authors present overviews of these areas and discuss ongoing work efforts of experts in each.The United States currently faces several new, concurrent large-scale health crises as a result of terrorist activity. These crises are both real and potential, both known and unknown in their direction and magnitude. Each one carries large demands for the collection, analysis, coordination, and distribution of health information. The need for applied informatics expertise may be more pressing, and more in the public eye, than ever before.In particular, three major health threats have risen sharply in urgency and public consciousness:

• Bioterrorism—the threat of widespread delivery of anthrax, smallpox, and other agents of illness. Optimal response to bioterrorist threats requires continuous surveillance with the collection of multifactorial data; coordination and standards to combine data coming from many hospitals and agencies; analysis and logic to detect unusual, statistically significant patterns from highly specific and less-specific indicators; and reliable, centralized sources of current diagnostic and therapeutic information.
• Mass disasters—local events that produce thousands of casualties, often overwhelming the usual capacity of health care delivery systems. In disasters, it is imperative to manage and dispatch resources to avoid bottlenecks, increase capacity through the temporary use of additional services, reduce idle time through precise advance communication, and track both patients and supplies.
• Remote military operations—problems of preventing and treating illness and injury among soldiers in remote, inaccessible regions, thousands of miles from appropriate medical expertise. Field health care can be improved by appropriate communication from the field to local medical corps and base hospitals, secure access to patient data from central data banks, and telemedicine techniques that allow a centrally located expert to provide service to multiple field locations.

Without question, there is a critical need for information management and communication in generating coordinated, effective action to prevent large-scale health problems and to respond to them when they arise. In this article, we present overviews of each area and discuss the ongoing efforts of experts who began working on these problems long before the current national crisis.     

医学信息学的研究维度、目标任务与研究热点

基于信息链视角提出医学信息学的四大研究维度：知识维度、行动维度、决策维度、智慧维度,针对不同研究维度提出了医学信息学的研究目标与任务。通过标题词抽取的高频名词术语识别了近5年医学信息学研究的六大研究热点主题：临床信息学与生物医学信息学、医院信息系统、基于互联网的健康信息和卫生保健、医疗健康信息技术应用调查及其案例分析、医学知识发现、远程医疗。医学信息学研究热点在研究维度上表现为以医学信息学研究的知识纬度为主,以决策纬度和智慧纬度为辅。     

Bioterrorism : A Public Health Perspective

The intentional release or threat of release of biologic agents (i.e. viruses, bacteria, fungi or their toxins) in order to cause disease or death among human population or food crops and livestock to terrorize a civilian population or manipulate the government in the present scenario of increased terrorist activity has become a real possibility. The most important step in the event of a bioterrorist attack is the identification of the event. This can be achieved by generating awareness, having high degree of suspicion and having a good surveillance system to assist quick detection.Bioterrorist attacks could be covert or announced and caused by virtually any pathogenic microorganism. Bioterrorist agents of major concern have been categorized as A, B and C based on the priority of the agents to pose a risk to the national security and the ease with which they can be disseminated. The five phases of activities in dealing with a bioterrorist attack are preparedness phase, early warning phase, notification phase, response phase and recovery phase.A bioterrorism attack in a public place is a public health emergency. Early detection and rapid investigation is the key to contain such attacks. The role of public health epidemiologist is critical not only in determining the scope and magnitude of the attack but also in effective implementation of interventions.Key Words: Bioterrorism, Anthrax, Botulism, Plague, Smallpox, Public health emergency, Category A, B and C agents     

Should Degree Programs in Biomedical and Health Informatics be Dedicated or Integrated?

Education in biomedical and health informatics (BMHI) has been established in many countries throughout the world. For degree programs in BMHI we can distinguish between those that are completely stand-alone or dedicated to the discipline vs. those that are integrated within another program. After running integrated degree medical informatics programs at TU Braunschweig for 10 years at the B.Sc. and for 15 years at the M.Sc level, we (1) report about this educational approach, (2) analyze recommendations on, implementations of, and experiences with degree educational programs in BMHI worldwide, (3) summarize our lessons learned with the integrated approach at TU Braunschweig, and (4) suggest an answer to the question, whether degree programs in biomedical and health informatics should be dedicated or integrated. According to our experience at TU Braunschweig and based on our analysis of publications, there is a clear dominance of dedicated degree programs in BMHI. The specialization in medical informatics within a computer science program, as offered at TU Braunschweig, may be a good way of implementing an integrated, informatics-based approach to medical informatics, in particular if a dual degree option can be chosen. The option of curricula leading to double degrees, i.e. in this case to two separate degrees in computer science and in medical informatics might, however, be a better solution.     

Electronic health records and clinician burnout: A story of three eras

ObjectiveThe study sought to provide physicians, informaticians, and institutional policymakers with an introductory tutorial about the history of medical documentation, sources of clinician burnout, and opportunities to improve electronic health records (EHRs). We now have unprecedented opportunities in health care, with the promise of new cures, improved equity, greater sensitivity to social and behavioral determinants of health, and data-driven precision medicine all on the horizon. EHRs have succeeded in making many aspects of care safer and more reliable. Unfortunately, current limitations in EHR usability and problems with clinician burnout distract from these successes. A complex interplay of technology, policy, and healthcare delivery has contributed to our current frustrations with EHRs. Fortunately, there are opportunities to improve the EHR and health system. A stronger emphasis on improving the clinician’s experience through close collaboration by informaticians, clinicians, and vendors can combine with specific policy changes to address the causes of burnout.Target audienceThis tutorial is intended for clinicians, informaticians, policymakers, and regulators, who are essential participants in discussions focused on improving clinician burnout. Learners in biomedicine, regardless of clinical discipline, also may benefit from this primer and review.ScopeWe include (1) an overview of medical documentation from a historical perspective; (2) a summary of the forces converging over the past 20 years to develop and disseminate the modern EHR; and (3) future opportunities to improve EHR structure, function, user base, and time required to collect and extract information.     

Guideposts to the Future—An Agenda for Nursing Informatics

As new directions and priorities emerge in health care, nursing informatics leaders must prepare to guide the profession appropriately. To use an analogy, where a road bends or changes directions, guideposts indicate how drivers can stay on course. The AMIA Nursing Informatics Working Group (NIWG) produced this white paper as the product of a meeting convened: 1) to describe anticipated nationwide changes in demographics, health care quality, and health care informatics; 2) to assess the potential impact of genomic medicine and of new threats to society; 3) to align AMIA NIWG resources with emerging priorities; and 4) to identify guideposts in the form of an agenda to keep the NIWG on course in light of new opportunities. The anticipated societal changes provide opportunities for nursing informatics. Resources described below within the Department of Health and Human Services (HHS) and the National Committee for Health and Vital Statistics (NCVHS) can help to align AMIA NIWG with emerging priorities. The guideposts consist of priority areas for action in informatics, nursing education, and research. Nursing informatics professionals will collaborate as full participants in local, national, and international efforts related to the guideposts in order to make significant contributions that empower patients and providers for safer health care.     

Leveraging health information technology to achieve the “triple aim” of healthcare reform

Objective To investigate experiences with leveraging health information technology (HIT) to improve patient care and population health, and reduce healthcare expenditures.Materials and methods In-depth qualitative interviews with federal government employees, health policy, HIT and medico-legal experts, health providers, physicians, purchasers, payers, patient advocates, and vendors from across the United States.Results The authors undertook 47 interviews. There was a widely shared belief that Health Information Technology for Economic and Clinical Health (HITECH) had catalyzed the creation of a digital infrastructure, which was being used in innovative ways to improve quality of care and curtail costs. There were however major concerns about the poor usability of electronic health records (EHRs), their limited ability to support multi-disciplinary care, and major difficulties with health information exchange, which undermined efforts to deliver integrated patient-centered care. Proposed strategies for enhancing the benefits of HIT included federal stimulation of competition by mandating vendors to open-up their application program interfaces, incenting development of low-cost consumer informatics tools, and promoting Congressional review of the The Health Insurance Portability and Accountability Act (HIPPA) to optimize the balance between data privacy and reuse. Many underscored the need to “kick the legs from underneath the fee-for-service model” and replace it with a data-driven reimbursement system that rewards high quality care.Conclusions The HITECH Act has stimulated unprecedented, multi-stakeholder interest in HIT. Early experiences indicate that the resulting digital infrastructure is being used to improve quality of care and curtail costs. Reform efforts are however severely limited by problems with usability, limited interoperability and the persistence of the fee-for-service paradigm—addressing these issues therefore needs to be the federal government’s main policy target.     

大数据在生物医学信息学中的应用

大数据在生物医学信息学研究中的作用日益重要,介绍大数据在生物信息学、临床医学信息学、影像信息学和公共卫生信息学4个领域的应用,列举并总结一些最近的工作进展,对未来大数据在生物医疗领域的发展进行展望。     

Don E. Detmer and the American Medical Informatics Association: An Appreciation

Don E. Detmer has served as President and Chief Executive Officer of the American Medical Informatics Association (AMIA) for the past five years, helping to set a course for the organization and demonstrating remarkable leadership as AMIA has evolved into a vibrant and influential professional association. On the occasion of Dr. Detmer's retirement, we fondly reflect on his professional life and his many contributions to biomedical informatics and, more generally, to health care in the U.S. and globally.     

Methodologic Issues in Health Informatics Trials: The Complexities of Complex Interventions

Objective

All electronic health (e-health) interventions require validation as health information technologies, ideally in randomized controlled trial settings. However, as with other types of complex interventions involving various active components and multiple targets, health informatics trials often experience problems of design, methodology, or analysis that can influence the results and acceptance of the research. Our objective was to review selected key methodologic issues in conducting and reporting randomized controlled trials in health informatics, provide examples from a recent study, and present practical recommendations.

Design

For illustration, we use the COMPETE III study, a large randomized controlled clinical trial investigating the impact of a shared decision-support system on the quality of vascular disease management in Ontario, Canada.

Results

We describe a set of methodologic, logistic, and statistical issues that should be considered when planning and implementing trials of complex e-health interventions, and provide practical recommendations for health informatics trialists.

Conclusions

Our recommendations emphasize validity and pragmatic considerations and would be useful for health informaticians conducting or evaluating e-health studies.     

AMIA Board white paper: definition of biomedical informatics and specification of core competencies for graduate education in the discipline

The AMIA biomedical informatics (BMI) core competencies have been designed to support and guide graduate education in BMI, the core scientific discipline underlying the breadth of the field''s research, practice, and education. The core definition of BMI adopted by AMIA specifies that BMI is ‘the interdisciplinary field that studies and pursues the effective uses of biomedical data, information, and knowledge for scientific inquiry, problem solving and decision making, motivated by efforts to improve human health.’ Application areas range from bioinformatics to clinical and public health informatics and span the spectrum from the molecular to population levels of health and biomedicine. The shared core informatics competencies of BMI draw on the practical experience of many specific informatics sub-disciplines. The AMIA BMI analysis highlights the central shared set of competencies that should guide curriculum design and that graduate students should be expected to master.     

Defining the Medical Subspecialty of Clinical Informatics

As the professional home for biomedical and health informaticians, AMIA is actively working to support high quality relevant professional education and research opportunities. This issue of JAMIA presents two key documents that provide tangible evidence of progress on this front. In this editorial, we describe the context and specific purpose of the two documents, how they were developed, and AMIA's plans to build upon the documents.     

The emerging role of clinical informatics fellows in service learning during the COVID-19 pandemic

ObjectiveThe study sought to describe the contributions of clinical informatics (CI) fellows to their institutions’ coronavirus disease 2019 (COVID-19) response.Materials and MethodsWe designed a survey to capture key domains of health informatics and perceptions regarding fellows’ application of their CI skills. We also conducted detailed interviews with select fellows and described their specific projects in a brief case series.ResultsForty-one of the 99 CI fellows responded to our survey. Seventy-five percent agreed that they were “able to apply clinical informatics training and interest to the COVID-19 response.” The most common project types were telemedicine (63%), reporting and analytics (49%), and electronic health record builds and governance (32%). Telehealth projects included training providers on existing telehealth tools, building entirely new virtual clinics for video triage of COVID-19 patients, and pioneering workflows and implementation of brand-new emergency department and inpatient video visit types. Analytics projects included reports and dashboards for institutional leadership, as well as developing digital contact tracing tools. For electronic health record builds, fellows directly contributed to note templates with embedded screening and testing guidance, adding COVID-19 tests to order sets, and validating clinical triage workflows.DiscussionFellows were engaged in projects that span the breadth of the CI specialty and were able to make system-wide contributions in line with their educational milestones.ConclusionsCI fellows contributed meaningfully and rapidly to their institutions’ response to the COVID-19 pandemic.     

Training Multidisciplinary Biomedical Informatics Students: Three Years of Experience

Objective

The European INFOBIOMED Network of Excellence ¹ recognized that a successful education program in biomedical informatics should include not only traditional teaching activities in the basic sciences but also the development of skills for working in multidisciplinary teams.

Design

A carefully developed 3-year training program for biomedical informatics students addressed these educational aspects through the following four activities: (1) an internet course database containing an overview of all Medical Informatics and BioInformatics courses, (2) a BioMedical Informatics Summer School, (3) a mobility program based on a ‘brokerage service’ which published demands and offers, including funding for research exchange projects, and (4) training challenges aimed at the development of multi-disciplinary skills.

Measurements

This paper focuses on experiences gained in the development of novel educational activities addressing work in multidisciplinary teams. The training challenges described here were evaluated by asking participants to fill out forms with Likert scale based questions. For the mobility program a needs assessment was carried out.

Results

The mobility program supported 20 exchanges which fostered new BMI research, resulted in a number of peer-reviewed publications and demonstrated the feasibility of this multidisciplinary BMI approach within the European Union. Students unanimously indicated that the training challenge experience had contributed to their understanding and appreciation of multidisciplinary teamwork.

Conclusion

The training activities undertaken in INFOBIOMED have contributed to a multi-disciplinary BMI approach. It is our hope that this work might provide an impetus for training efforts in Europe, and yield a new generation of biomedical informaticians.     

Implementing Syndromic Surveillance: A Practical Guide Informed by the Early Experience

Syndromic surveillance refers to methods relying on detection of individual and population health indicators that are discernible before confirmed diagnoses are made. In particular, prior to the laboratory confirmation of an infectious disease, ill persons may exhibit behavioral patterns, symptoms, signs, or laboratory findings that can be tracked through a variety of data sources. Syndromic surveillance systems are being developed locally, regionally, and nationally. The efforts have been largely directed at facilitating the early detection of a covert bioterrorist attack, but the technology may also be useful for general public health, clinical medicine, quality improvement, patient safety, and research. This report, authored by developers and methodologists involved in the design and deployment of the first wave of syndromic surveillance systems, is intended to serve as a guide for informaticians, public health managers, and practitioners who are currently planning deployment of such systems in their regions.Bioterrorism preparedness has been the subject of concentrated national effort¹ that has intensified since the events of fall 2001.² In response to these events, the biomedical, public health, defense, and intelligence communities are developing new approaches to real-time disease surveillance in an effort to augment existing public health surveillance systems. New information infrastructure and methods to support timely detection and monitoring,^3,4,5,6,7 including the discipline of syndromic surveillance, are evolving rapidly. The term syndromic surveillance refers to methods relying on detection of clinical case features that are discernable before confirmed diagnoses are made. In particular, prior to the laboratory confirmation of an infectious disease, ill persons may exhibit behavioral patterns, symptoms, signs, or laboratory findings that can be tracked through a variety of data sources. If the attack involved anthrax, for example, a syndromic surveillance system might detect a surge in influenza-like illness, thus, providing an early warning and a tool for monitoring an ongoing crisis.Unlike traditional systems that generally utilize voluntary reports from providers to acquire data, contemporary syndromic surveillance relies on an approach in which data are continuously acquired through protocols or automated routines. The real-time nature of these syndromic systems makes them valuable for bioterrorism-related outbreak detection, monitoring, and investigation. These systems augment the capabilities of the alert frontline clinician who, athough an invaluable resource for outbreak detection, is generally better at recognizing individual cases rather than patterns of cases over time and across a region. Syndromic surveillance technology may be useful not only for bioterrorism event detection, but also for general public health, clinical medicine, quality improvement, patient safety, and research. This report, authored by developers and methodologists involved in the design and deployment of the first wave of syndromic surveillance systems, is intended to serve as a guide for informaticians, public health managers, and practitioners who may be planning deployment of such systems in their regions.     

Bioshock : Biotechnology and bioterrorism

In the recent past, the threat of a global bioterrorist attack has increased dramatically. In addition to the already existing microorganisms and techniques, the recent explosion in biotechnology has considerably addedto the arsenal of the bioterrorist. Molecular technologies are now available which can be used by committed bioterrorist groups to manipulate and modify microorganisms so as to make them increasingly infectious, virulent or treatment resistant for causing maximum casualties. Infectious diseases which are likely to be used as bioweapons are Anthrax, Botulism, Plague, Smallpox and Brucella. Molecular techniques like immunoassays and nucleic acid amplification are now available to detect bioattacks. This article discusses the threat of bioterrorism. It also evaluates the molecular diagnostic methods and the future of early containment of a bioterrorist attack using molecular techniques.