Health Informatics: A Systems Perspective, Second Edition

PREFACE

Could a hurricane in Puerto Rico affect clinical practice in Washington, DC, eight weeks later?

Yes. In fact, it did just that. Before Hurricane Maria nearly destroyed the island in the fall of 2017, Puerto Rico supplied more pharmaceutical products to the US market than did any other state or territory—nearly $40 billion worth. These products included intravenous (IV) bags that contain saline solution to which drugs are added later or that are preloaded with a mixture of medications. Plants in Puerto Rico that manufactured the IV bags were shut down in the aftermath of the hurricane, leading to a shortage of these bags in US hospitals. Patients at MedStar Washington Hospital Center in Washington, DC, for example, who typically received IV medications, were administered the pill forms of the drugs instead (Kodjak 2017).

All parts of the world, along with their endeavors and challenges, have become increasingly interconnected. What happens in one system (e.g., community, territory, country) affects in some ways the activities and outcomes in other systems. As evidenced by the long-range effects of the catastrophe in Puerto Rico, the health system is affected by environmental, infrastructure, manufacturing, economic, and many other systems.

We believe that information technology (IT) informed by these interconnected systems (what we refer to as health systems informatics) is necessary to properly support clinical care, clinical decision making, and healthcare management. Health systems informatics has the power to enable the transformation of the US health system and individual healthcare organizations into entities characterized by information sharing, coordinated care, patient centeredness, and evidence-based clinical decisions.

In this second edition of Health Informatics: A Systems Perspective, we once again cover both conceptual and physical IT systems that interact with and affect healthcare processes and outcomes. All chapter and case study authors come from both academic and practice settings and represent a wide range of training and experience in the health informatics field. Such a diversity imparts a balanced theoretical and practical perspective to this book.

This book examines health systems informatics in the context of clinical decision making across the health professions (chapters 2, 3, and 6), knowledge management (chapter 5), interactions and interdependencies among the health professions (chapters 1, 3, 7, and 14), developments in IT and data representation (chapters 12 and 13), cybersecurity (chapter 16), population health and global health (chapters 10 and 11), management and corporate systems (chapters 4 and 15), Big Data (chapters 9 and 16), advances in science and scientific medicine (chapter 9), healthcare financing and valuation (chapter 15), and the role of patients and e-health (chapters 3 and 8).

Each chapter offers the following:

Learning Objectives that list the main takeaways from the discussion

Key Concepts that list the major topics explored and terms used

Sidebars that present extra information, examples, scenarios, or opportunities for critical thinking and application

Terminology definitions on the page

Chapter Discussion Questions that serve as a framework for reviewing, conceptualizing, or articulating the concepts

A Case Study that translates the theories into real-world situations

Case Study Discussion Questions that challenge the reader's understanding and judgment

Additional Resources that point to websites, books, and journal articles relevant to the concepts discussed

References that include both current and classic publications

A glossary, an appendix (Professional Societies, Accrediting Agencies, and Additional Insights in Health Informatics), and an index round out the book.

Writing this second edition with a systems perspective was a daunting but rewarding task. We hope you find the culmination of our work to be beneficial and valuable to your studies and career.

Gordon Brown, Kalyan Pasupathy, and Timothy Patrick

Reference

Kodjak, A. 2017. Hurricane Damage to Manufacturers in Puerto Rico Affects Mainland Hospitals, Too. Published November 15. http://wuwm.com/post/hurricane-damage-manufacturers-puerto-rico-affects-mainland-hospitals-too.

Instructor Resources

This book's instructor resources include the authors’ responses to the chapter and case study discussion questions; PowerPoint slides to supplement classroom discussions and lectures; and suggested activities for exploring chapter topics, including data sets.

For the most up-to-date information about this book and its instructor resources, go to ache.org/HAP and browse for the book by title or author names.

This book's instructor resources are available to instructors who adopt this book for use in their course. For access information, please e-mail hapbooks@ache.org.

CHAPTER

1

HEALTH SYSTEMS INFORMATICS: A TRANSFORMATIONAL SCIENCE

Gordon D. Brown

Learning Objectives

After reading this chapter, you should be able to do the following:

Understand the concept of open systems theory.

Conceptualize health systems informatics and differentiate it from bioinformatics and biomedical informatics as an analytical framework.

Explain the transformative power of information technology.

Discuss the differences in concept but interdependencies in function between management information systems and health systems informatics.

Apply clinical information technology to process improvement and system transformation.

Key Concepts

Complex adaptive systems

Conflict between business and clinical functions

Health systems informatics and biomedical informatics

Management information systems

Transformational change

Introduction

Health systems informatics strives to align the disparate components of a healthcare organization—professional, financial, and organizational—to achieve optimal system performance. How did these components become so dysfunctional in an advanced nation such as the United States? The great irony is that we built the US health system that way, and we continue to maintain it that way.

Health systems informatics assumes a larger integrated systems perspective, according to systems theory (Encyclopedia.com 2001):

As a way of looking at things, the systems approach in the first place means examining objects or processes, not as isolated phenomena, but as interrelated components or parts of a complex. An automobile may be seen as a system; a car battery is a component of this system. The automobile, however, may also be seen as a component of a community or a national transportation system. Indeed, most systems can be viewed as subsystems of more encompassing systems.

This chapter examines the interdependencies among clinical, organizational, financial, and individual (patient) functions and the role of health systems informatics in guiding and connecting these functions to achieve optimal performance. Health systems informatics provides the decision-making logic that serves as the basis for designing, financing, managing, and evaluating the healthcare organization to improve performance. It enables and requires the transformation of the roles and behaviors of health professionals but does not diminish them. It views the clinical function from the perspective of complex adaptive systems. The result of these efforts is transformational change, wherein each function is fundamentally realigned to serve the more encompassing system.

Complex Adaptive Systems in Healthcare

Health systems informatics enables the conceptualization of an integrated clinical perspective, based on the theory of complex adaptive systems. Complex adaptive systems are characterized by large numbers of interdependent parts or agents—each with its own pattern relationships and interaction complexities—that adapt to and create their environments through coevolution (Akgün, Halit, and Byrne 2014; Birdsey, Szabo, and Falkner 2017; Lee and Mongan 2009). By nature, dynamic systems are transformational in that they call for new delivery models, professional roles, organizational structures, and system designs, but they are difficult to analyze. If systems reject or are slow to react to new enabling technologies, they will underperform and their very viability might be threatened. A systems perspective or systems theory recognizes the following:

The health of a population is not determined primarily by its health system, no matter how structured, but by its community and lifestyle.

Simple generalizations about how services should be provided or how change should be made—such as whether privatizing services will make them more efficient—are rejected. A systems perspective does not narrowly focus on legacy pieces of a system—such as how physicians should be educated, healthcare services financed, or information systems structured—but broadly considers how the overall system should function to obtain superior results.

The functions and strengths of both the private (investor-owned) and public sectors, as well as the nonprofit or plural sector that draws unique strengths from the private and public sectors (Mintzberg 2015), must be considered. The plural sector has long been the organizational basis for much of the US health system and might offer even greater potential for the future. A full exploration of the private, public, and plural sectors is beyond the scope of this book, but they are fundamental to an understanding of health system effectiveness and efficiency.

The design of health systems is not determined by traditional or prescriptive structures and roles of organizations, financing, health professionals, or information systems. Each of these functions is subordinate to optimal outcome measures of clinical quality, continuity, patient satisfaction, efficiency, and population health. This assumption is made more complex because no template or single pathway to achieving optimal performance exists. Systems theorists use the term equifinality to suggest that any given end can be achieved by many different means. However, the means do not define the system and are accountable to the desired end state. Each region and country envisions its own system structure; each will be different and each can be optimal. Information technology (IT) can provide the systems architecture that enables the structure of functions, but it cannot dictate them. Each function must pursue its own design, measured against the crucible of optimal system performance. IT can enable a national or even global health information exchange, consistent with a patient-oriented system. Such exchange is a goal, but each system must craft its own structure and not impose any preconceived or central planning (teleologic) design on the professions, organizations, or other functions. Central control that imposes rigid designs on health system structure and function has proven to be ineffective (Garrety et al. 2016). Commercial and business applications have demonstrated the ability to facilitate the accomplishment of corporate goals while allowing local autonomy and freedom to innovate.

Leading transformational change in clinical decision making is not based on a knowledge of computers, information science, or medical informatics. Although these sciences are important, they traditionally have been applied within health professions, organizations, and systems that are themselves obsolete. Health systems informatics assumes a broader focus, including providing the science for guiding how organizations, systems, and professional and patient roles can be structured to improve system performance. Each function has its own identity and integrity. Although interdependent, functions are neither defined by nor subordinate to another function but to optimal system performance only. All must be aligned, or the system will be dysfunctional. For example, organizations might try to enforce the use of clinical guidelines and protocols through bureaucratic rules and sanctions based on organizational logic and reward. Neither organizations nor professions possess the dominant logic for system structure; this structure is based on optimal clinical quality, system efficiency, and population health.

Patients should have access to information and participate in the clinical decision process, but they cannot determine the design or content of clinical decision support systems (CDSSs). Increased information sharing and participation of patients in clinical decisions will transform the health system.

In addition, the role of the health professions in society is essential and protected, which is justified by their contribution not to the profession but to what society determines as optimal system performance (as discussed in chapter 3). Such protection assumes that as society changes, the professionals will change. Maintaining the historical domains and decision-making context of the medical profession, for example, violates the physicians’ protected role in society. However, a changing role for physicians does not necessarily mean a diminished role; in fact, it might be enhanced. The structure of healthcare organizations has long been detached from the clinical function and operates under the principle that organizations could not interfere with the practice of medicine and the autonomy of physicians. A landmark case occurred in the 1930s when Drs. Ross and Loos were removed from the Los Angeles County Medical Association. The association also wanted these physicians’ licenses revoked for violating professional ethics by engaging in the corporate practice of medicine (Starr 1982, 299–304). The Ross-Loos Group had established a group practice and the first managed care plan in the United States—a prepaid health plan that emphasized prenatal care and childhood immunization. To enable the health system to harness the power of IT, it must undergo an equally disruptive transformation, like the one Drs. Ross and Loos had taken. In this book, we explore the field of health systems informatics as a transformational science.

Bioinformatics

The term informatics is credited to A. I. Mikhailov, of the scientific information department of Moscow State University, who first used it in his 1968 book Oznovy Informatiki (Foundations of Informatics) (Collen 1995). It is adopted from the Russian term informatik or informatikii, defined as a study of the structure and general properties of scientific information and the laws of all processes of scientific communication (Collen 1995, 39). This definition establishes informatics, at its root, as the study of linguistics applied broadly to scientific language. As such, the field of informatics combines basic science with computational science, particularly computer science.

Bioinformatics can be defined as a form of computational linguistics—the statistical or rule-based modeling of scientific information. In 1976, the Oxford Dictionary defined informatics as the discipline of science which investigates the structure and properties of scientific information, as well as the regularities of scientific information activity (Collen 1995, 39). The focus of bioinformatics is on the management, analysis, and interpretation of data from biological experiments and observational studies (Moore 2007). The sequence analysis of the three billion chemical base pairs that make up human DNA would not be possible without complex algorithms and powerful computers. The standard language and the volume of data were a perfect match for the computer, and the level of analyses grew with the rapid increase in computer memory and processing speed.

One might regard bioinformatics, with its focus on computational biology, as peripheral or unrelated to the topic of health systems informatics. Yet, IT enables bioinformatics to transcend the laboratory, informing clinical decision making as well as individual patients and consumers. Clinical bioinformatics has emerged as a field of translational science that integrates genomics and proteomics data with clinical data to provide molecular diagnostics, pharmacogenomics, and evidence-based clinical outcomes. Bioinformatics continues to evolve by incorporating diverse technologies and methodologies from disparate fields to apply advanced computational and informational tools to biomedical research (Mattick et al. 2014; Sarkar et al. 2011).

Medical Informatics

A 1999 report of the Biomedical Information Science and Technology Initiative (BISTI), formed by the National Institutes of Health, described the field of informatics applied to healthcare and labeled it biomedical informatics (Friedman et al. 2004). The term was broadly applied to include bioinformatics, imaging informatics, clinical informatics, and public health informatics (exhibit 1.1). Imaging and clinical informatics have generally been included in the description of medical informatics, and we use the term medical informatics as the inclusive term. Although nursing informatics is considered its own area of scientific exploration (chapter 7), it is discussed here under the inclusive heading of medical informatics because it draws on the same informatics core competencies that are applied to clinical practice. Although the BISTI report included public health informatics in its paradigm because it also draws on the same core competencies, we discuss it separately given its primary focus on population health and not medical care. The BISTI report was an important contribution because it delineated a core body of knowledge for informatics applied to the range of areas. Our focus builds on it to explore how this technology helps enable the transformation of these areas.

The underlying theories, techniques, and methods that serve as the core competencies of medical informatics are algorithms, data structures, database design, ontology/vocabulary, knowledge representation, programming languages, software engineering, modeling, and simulation (Friedman et al. 2004). Medical informatics originated from the clinical area of pathology, which had developed standardized language applied to large data sets, requiring the distribution of standard test results to a range of clinical services. Physicians demanded tests that used standardized measures and processes so that the results could be interpreted on the basis of good science. Imaging informatics also benefited from standardized measures and language but lagged as a result of the limitations of the computer to store and process large amounts of data. In contrast, clinicians in other specialties valued flexibility in language (e.g., text over drop-down lists), tailoring medical records to individual choice and clinical decisions based on individual judgments and not the evidence derived from CDSSs.

The step from measuring and reporting laboratory findings to developing the electronic medical record (EMR) was a major advance. The idea of an EMR has been around for half a century, but it proved to be a complex challenge in part because the structure of clinical information lacked basic vocabularies and data standards essential for a unified language. Automating the medical record was greatly hampered by the lack of computing power and a common clinical vocabulary. The first initiatives in EMR development focused on enabling clinicians to record and retrieve clinical data to frame a diagnosis and treatment plan. The EMR could locate and present clinical information about previous conditions, tests, diagnoses, and treatment protocols. The operative question was whether the EMR would be developed by individual clinicians, departments, organizations, or the health system. Lacking a clear conceptual framework or vision of future applications, healthcare entities pursued all four approaches, resulting in EMRs that were not compatible—even within institutions. The valued priority was initially to maintain organizational autonomy and not integration. Developing a common clinical language was thus made more complex by the proliferation of different systems with different vocabularies and syntax.

The computer has become a tool for health professionals to record, store, retrieve, process, distribute, and integrate clinical information. As the health professions maintain and advance their own informatics perspectives, they inherently embrace collaboration and develop a greater team orientation, both of which are essential for improving clinical care. Digitizing information brought about changes in cognitive and human factor interfaces, but these changes were limited to clinical decision making within fundamentally traditional roles. This form of change might be characterized as evolutionary or transactional as opposed to transformational or innovative (Havighurst 2008; Herzlinger 2006; Stange, Ferrer, and Miller 2009). The availability of electronic information enabled not only greater and better information to be processed in a more readable form but also clinical evidence to be displayed and shared to support decisions that allow health professionals to better serve patients. Through this process, disparate EMRs became more standardized and integrated, enabling them to share clinical information and to access evidence-based clinical guidelines, thus transforming them into electronic health records (EHRs).

Public Health Informatics

The first major conceptual development in informatics was in public health; although it used the same logic, it occurred long before the computer was envisioned. In the early 1800s, public health workers in many countries saw the need for a common vocabulary for classifying diseases and causes of death that would enable the establishment of surveillance programs locally, nationally, and even internationally. The first initiative to standardize clinical information was the development of the International Classification of Diseases (ICD), first by the International Statistical Congress in 1853 and later by the World Health Organization (2018).

Surveillance as an outcome measure is still a public health focus in the United States and most countries, as evidenced by the presence of many registries and surveys of illness and health status of populations. Registries are federally mandated and center on particular diseases (e.g., hemophilia), groups of similar diseases (e.g., cancer), or specific exposure (e.g., toxins in hazardous-waste sites). Each registry requires a degree of standardization to provide summary data on incidence and prevalence.

Outcomes data, however, are difficult to link to individual clinical decisions. The aggregation of data, and data's use as outcomes information, will be facilitated by advanced IT. In the future, public health registries can be generated from data in EMRs, making current efforts obsolete. A major transformation will be the integration of public health data systems with medical systems, which will enable medical care to be linked to health risk and population health. This transformation will result in the medical care system assuming shared responsibility for population health by focusing on individual health and wellness. Population health will be an important factor in the transformation to health systems informatics (chapter 10).

Increasingly, health system leaders are envisioning IT as the integrating architecture for professionals, organizations, and patients within the larger regional, national, or international context. This vision is difficult to realize because of the complexity of the task and because clinicians, managers, and policymakers were trained within the silos of their own profession or discipline. As a result, efforts have been focused on the institutional level—that is, the strategy of integrating medical records within institutions. Integrating records across institutions has been pursued primarily through acquisition, leasing, or some other way the institutions are integrated. The challenge now is integrating IT across disparate professions and organizations. A common architecture for integrating these public–private, decentralized, and disparate systems of care is needed to meet this challenge, but an old saying must be heeded: You cannot build a skyscraper by nailing together dog houses. Health systems informatics includes and builds on biomedical informatics using new architecture that is based on system optimization.

Health Systems Informatics and Transformational Change

Health systems informatics starts with the desired system outcomes and then considers the structure of each function of that system and the changes to those functions necessary to achieve the desired outcome. The focus is thus on the performance of the overall system and how each function—the professions, organizations, financing, IT, public policies, and so on—is aligned to achieve optimal performance. IT does not assume any preconceived structure but provides the logic for the system. This architecture, in turn, is based on open systems theory. Open systems theory views the organizational and clinical functions in terms of their relationship with and contribution to overall system performance. Healthcare organizations and professionals have historically pursued a closed-system focus, as have many business enterprises, assuming the independence of internal functions and adopting rationalistic approaches on the basis of optimizing individual functions. Open systems are considered not only in relation to their environment but also in relation to internal components because interactions between components affect the system as a whole. Open systems theory was developed by biological scientists such as Ludwig von Bertalanffy, who observed that (1) biological and social systems function in relationship to their environment in that they receive inputs, transform those inputs, and export outputs to maximize the system and (2) the functions are internally interdependent such that the interactions among them affect the system as a whole. This concept introduced a new science for understanding the structure and function of organizations and other social systems (Kast and Rosenzweig 1972).

Introduced earlier, equifinality is the belief that there is no one best way to structure a system as long as the means deliver optimality. An underlying assumption of health systems informatics is that implementation of IT does not cause change in the health system but enables its transformation. The health system has lagged most business sectors in fully using advanced IT, instead concentrating its efforts on automating existing processes. Health system change will be realized through the vision and innovation of health leaders who recognize and embrace the transformative power of health systems informatics.

Extended Model

The model developed by Friedman and colleagues (2004) based on the BISTI report (exhibit 1.1) is extended here to include complex adaptive systems (exhibit 1.2). This extension does not imply that the original model is incorrect but rather that it now includes the concepts of industrial engineering science, organizational theory and behavior, and systems theory. The exhibit 1.1 model correctly depicts the linear relationship of the core body and application of science with the four domains—bioinformatics, imaging informatics, clinical informatics, and public health informatics. For example, in clinical informatics, the EMR requires doctors to use the computer for charting and informing their decisions, thus changing behaviors but not the fundamental structure of the clinical process. When health professionals apply the methods, techniques, and theories of complex adaptive systems (exhibit 1.2), decisions and work processes are transformed. The extended model, expressed in a nonlinear manner, adds a conceptual dimension. Health systems informatics does not merely add a dimension in itself. However, the addition of complex adaptive systems expands biomedical informatics and enables health systems informatics to substantially alter all other relationships, reflecting its disruptive, transformative nature and the profound change it brings to health system structure and function.

Opportunities for Interprofessional Education and Interoperability

A cross-cutting theme in this book is the alignment of multiple systems—specifically, clinical teams (including patients) working together, knowingly or unknowingly, on clinical care processes and decision making—to provide the best possible patient care. This theme highlights two fundamental concepts—interprofessional education (IPE) and interoperability. As you read this book, think of opportunities for IPE and circumstances that signal the need for interoperability of semantics, systems, data, information, policies, persons, and other resources of the health system.

Transformational Change in Banking

Understanding the extended biomedical informatics model (exhibit 1.2) requires an understanding of the difference between automating processes and transforming processes. An example is the automated teller machine (ATM) in the banking industry.

Before the ATM emerged, personal banking was conducted in large banks staffed by numerous tellers working side by side behind counters. Withdrawing cash from a checking account entailed going to the bank (typically located downtown) between the hours of 9:00 a.m. and 4:00 p.m., filling out a withdrawal slip, and getting in line for the next available teller. The teller received the withdrawal slip and dispensed the appropriate amount of cash, usually counting out the money twice to avoid an error.

Initially, the ATM was designed to be placed behind the counter to support the teller. The teller would take the customer's credit card, swipe it through the ATM, receive the money, and count it out to the customer. One reason banks closed at 4:00 p.m. before the advent of ATMs was so that tellers could count the cash and complete the accounting to close the books for the day. The ATM replaced that process; it not only counted the money but also provided a simultaneous accounting of all transactions. Thus, the ATM was conceived as transactional but not transformational—it automated the work process but did not transform it.

A bright, visionary clerk at a bank asked why the ATM was not placed in front of the counter to allow the customers to swipe their card and directly receive their cash and receipt. This suggestion was met by opposition, with the bank president and vice presidents arguing that customers would not trust a machine to count their money correctly, although engineers emphasized that machines were actually more accurate than people in performing this task. In addition, the skeptics believed money transactions were a personal experience, so customers would not be comfortable interacting with a machine; plus, it would destroy the banker–customer relationship. The clerk was persistent, however, and the change-averse president reluctantly agreed to test the restructuring of the work process by placing an ATM in front of the counter. Customers flocked to the machine because of the convenience it offered.

After the ATM was moved from behind the counter, it began appearing outside the bank—at commercial establishments and neighborhood branches—and was available 24/7. The transformation of the banking industry was on! Today, ATMs are everywhere, including in shopping malls and hospitals, and even on street corners. They also have become travel-friendly; international travelers, for example, can withdraw money from their bank account and receive the local currency at the current exchange rate in the country they are visiting. The ATM proved to be a technology that at first changed processes but ultimately transformed functions, jobs, institutions, and customers in the banking industry.

Health leaders and practitioners, like the reluctant bankers, primarily envision electronic systems as automating functions and processes (transactional change) rather than as transforming the entire enterprise. Although extremely disruptive to the current way of doing things, the application of electronic systems or IT will be transformative in the long run. Introducing such innovation is the work of both organizational leaders and health professionals.

Focus

Health systems informatics expands the focus from the clinical decision to the structure of the delivery system. The clinical function cannot be substantially transformed within a system whose structure is based on a different logic. Assumptions about traditional structures of clinical processes, hospitals, clinics, financial services, and health policies are made obsolete through transformational change in healthcare organizations. Each of these functions must be transformed, based on the logic of optimal system performance enabled by the power of IT (Glushko 2013). Health systems informatics constitutes transformational change based on higher-order goals and differs from transactional change, which is focused on tactics, incremental processes, and performance metrics. A microprocess can be changed, even radically, but that change is not transformational because transformation is a macro systems concept.

Health systems informatics integrates the science of IT, clinical science, engineering, and the social sciences to conceptualize the design of a healthcare organization that is seamless from the patient perspective and that ensures choice, continuity, quality, and efficiency. Envisioning such a system may be difficult given that we are captive to traditional models, which have proven to fall significantly short of the aforementioned standards. IT can serve as the architecture and logic for developing systems that are tailored to individual conditions and values but still serve essential societal goals, such as maintaining local hospitals and clinics and providing flexible health insurance plans. Thus, many elements of the existing system will be maintained, but their function will be fundamentally changed and aligned with a higher-order goal based on outcomes.

The integration of the logic of the clinical and business functions is difficult given that these functions are a clash of history, values, and culture. Health systems informatics ushers in change that will be highly disruptive to the healthcare organization and, as such, requires visionary, innovative, and highly skilled leaders. The appropriateness of such change is measured by whether it adds value to improved organizational performance in clinical care quality, operational or business efficiency, and patient satisfaction. The challenge is determining whether organizational leaders have the competencies and commitment to bring about this profound change.

Management Information Science

Management information science (MIS) is the application of advanced IT to the functional areas of both product and service organizations, including accounting, finance, marketing, strategy, purchasing, supply, and operations. A well-developed information system that is deeply ingrained in organizational cultures, MIS is fundamentally different in logic from health systems informatics but is nonetheless an inherent component of it.

Business Versus Clinical Functions

The classic or historical view of a healthcare organization is that the business function is different from the clinical function in logic and design. Thus, the responsibility for the clinical function (assumed by health professionals) is separate from the operation of the business function (overseen by managers and top executives) (Brown, Stone, and Patrick 2005, 31–50). MIS in healthcare organizations, as in corporations, was applied first to manage payroll, billing, and accounting; then to human resources; and then to the supply chain. These business functions, unlike medical or clinical functions, are well suited for electronic data processing because they possess universal vocabularies and standards and large databases. Generally accepted standards for measuring and reporting accounting and finance information, for example, were developed in the 1930s with the establishment of the Committee on Accounting Procedures. These accounting standards were not initiated with the computer in mind but with the aim of communicating with external stakeholders, including the public, which is the antithesis of the approach of the health professions. Given a standardized language, computers greatly facilitated the measuring, analyzing, storing, and reporting functions for the purpose of both internal operations and external communications.

Missed Technological Opportunities

The town of Barclay, Iowa, was founded in 1857 on a busy rural crossroads by a visionary named James Barclay. Several general stores, two hotels, a blacksmith forge, a drugstore, a jewelry store, two physician offices, a sawmill, a post office, and a cemetery soon were built one after another. Barclay's population was thriving and growing, and its future was bright. It was located two miles north of and between the larger towns of Independence and Waterloo, which were 35 miles apart. With a good road network, the town's location seemed ideal.

In the early 1860s, the Dubuque and Pacific Railroad initiated a survey to build a railroad across Iowa from Chicago. The company contacted James Barclay to gain the right of way through the town with tracks that would form a slight arc between Independence and Waterloo. Construction of a water tower and train depot would ensure that both goods and people were serviced. He refused right-of-way permission, believing that railroads conflicted with his vision of a rural town because they were noisy, dirty, and disruptive to a peaceful community. The company instead built a direct rail line with a water station between Independence and Waterloo, on a prairie two miles south of Barclay. A community sprang up around the water station and formed the town of Jesup.

Within a few years, nothing but the cemetery was left at Barclay. Oops!

Because the initial application of IT in health systems was solely in accounting and finance, MIS became functionally structured under the finance department. This initial focus was the genesis of the conflict in IT when it was extended to support both MIS and the clinical IT functions. Thus, the business function has an inherent corporate orientation, whereas the clinical function maintains an individual or professional perspective. This clash of structures and cultures is still a factor in the health system and directly affects the architecture, use, and effectiveness of IT. The two structures will remain in systems of the future, but each must change.

Conclusion

Health systems informatics in the US health system reflects the traditions, values, and strengths of the local and diverse health system because, as the saying goes, all healthcare is local. These values cannot and should not be changed by the imposition of an externally mandated system architecture for integration and uniformity. Such a mandated approach would fail in the United States, as it did in other countries (Garrety et al. 2016). As a result, the transformation of healthcare to an integrated and uniform information system is and will continue to be slow and messy. Traditional structures, services, and markets will continue to be pursued as innovation is initiated within new structures and strategies. This complexity has been identified by Hwang and Christensen (2007) as disruptive innovation. They identify the complexity of the process as integrating an enabling technology with an innovative business model, all within a coherent value network. This is a complex transformation process indeed.

Winston Churchill once said, Americans can always be counted on to do the right thing but only after they have exhausted all other possibilities. Certainly, we have a few possibilities yet to consider. Efforts are under way to learn how data from disparate institutions and registries can support the exchange of information and how automated systems can enable knowledge generation, transfer, and application to improve evidence-based decision making. Such systems will be local but will have the capacity to interface regionally, nationally, and internationally. The challenge is keeping healthcare local and responsive to individual needs and values while enabling broad access and maintaining the system's knowledge-based design.

Keeping it local does not mean keeping the system as it is. The health system must be transformed in a purposeful manner. Change will be disruptive, but the health system cannot use its current design as a justification for avoiding the chaos and disorder of transformation. Healthcare organizations and professionals must fundamentally change because the technology exists to design systems that provide significantly better quality, continuity, and patient satisfaction at a much lower economic cost. These values provide a mandate for system transformation that is unlike the changes of the past. The transformation of the US health system enabled by advanced IT is the subject of this book.

Chapter Discussion Questions

Describe the US health system as a complex adaptive system.

How does health systems informatics differ conceptually from bioinformatics and biomedical informatics? What is the scientific base for each?

What is transformational change, and why is health systems informatics considered to be transformational?

Describe the key functions of the US health system, and analyze them in the context of open systems theory.

In what ways was the development of the EMR disruptive to, yet an adaptation of, traditional clinical practice in hospitals?

Brian K. Hensel

You work for a leading electronic health record (EHR) company and support one of its biggest clients—an academic medical center. You are part of a team that helped this medical center achieve the highest level (stage 7) of the Healthcare Information and Management Systems Society's electronic medical record adoption model. The not-for-profit medical center owns a not-for-profit continuing care retirement community (CCRC), which operates independent living duplexes, assisted living apartments, and a nursing home with a separate wing offering Medicare-certified skilled nursing facility beds for post-acute rehabilitation and recovery. Your company wants to develop a long-term care EHR, and the medical center has agreed to do so for its nursing home, which would serve as the alpha site, but with an important stipulation: The EHR must support and facilitate the nursing home's recently adopted Vision of Care approach.

One year ago, the medical center created and filled a new position—vice president (VP) of post-acute, long-term, and palliative care services. This position reports directly to the CEO and is charged with leading a range of mostly nonhospital services and integrating these services across the system. Services reporting to the VP include the CCRC; palliative care services at the medical center's flagship hospital; and a system-owned hospice, home health agency, and adult day service program. Early on, the new VP began meeting with the nursing home's resident and family advisory council. Discussions at these meetings became the impetus for developing the nursing home's Vision of Care approach.

The nursing home's reputation was considered better than that of local competitors, but residents and family members of the advisory council expected more. The VP was gaining valuable and actionable feedback and decided to bring in faculty consultants familiar with long-term care from the local state university. These consultants organized the feedback from the advisory council and provided terminology that synthesized the needs expressed. They then worked with the nursing home's staff to form an implementation task force to determine what could be done to better meet the council's needs. Using the consultants’ report, the VP and the nursing home's leadership worked with the staff to develop the Vision of Care approach.

Vision of Care

Vision of Care responds to needs expressed by the advisory council and includes concepts from research literature that compares long-term care (where residents live) with other types of care, such as hospitals and the physician offices that patients visit. Person-centered care is emphasized instead of patient-centered care, and so is holistic, multidimensional care that includes but goes beyond the physical dimension of the medical model to assess and address psychosocial and spiritual needs. Protection of each resident's dignity is also a core goal. Within this framework, the Vision of Care vividly describes care that is personalized, connected to the community, and noninstitutionalized.

Personalized Care

Two dimensions of personalized care are identified. The first dimension is for staff to get to know each resident in ways other than the medical descriptor in the resident's chart. Meaningful, personal interactions between residents and staff are based on shared knowledge. Charlie, a resident on the advisory council, voiced, with others nodding in agreement, I don't think nurses, who see me every day, really know anything about me or about my life before coming here. Ann, whose father has latter-stage Alzheimer's, added, They don't know Dad was a mechanic and could fix about any car you can name. Or that he was the best fast-pitch softball pitcher in the whole state! The implementation task force recommended the creation of short digital stories of every resident, by digital media students from the university. Nursing home staff would be required to view these three- to five-minute stories. Cues such as a picture of Dad in his softball uniform would be placed in resident rooms to help jog the staff's memory.

The second dimension is for staff to get to know, in a more complete way and across dimensions of care, the personal needs and preferences of residents including food likes and dislikes and other important details, such as routine or favorite activities. Jaylen described how his mom loved to sit on the front porch in the afternoon when she lived at home: She misses that. Unless I'm here to help her, it seems sitting outside is out of the question, except for maybe official, planned outings.

Community-Connected Care

Care that is connected to the community includes bringing both the community to the residents and residents into the community. To nursing home residents, community represents not only the immediate surrounding community but their larger outside world. And, consistent with personalized care, each resident's community is different. Advisory council discussions revealed a longing by some local residents to attend community events. I know I can't get around like I did when we lived in the [independent living] duplex, or even the [assisted living] apartment, but I miss knowing about and going out to local events, like the yearly barbershop quartet concert—something we never missed. Hailey, who moved her father from another state to be closer to her, shared, Dad misses Friday night fish-frys at the VFW. Having a beer with other vets, including the younger ones. Though he appreciates the work and kindness of staff here, he doesn't really much enjoy making crafts and such during activities hour.

Noninstitutionalized Care

Institutionalization depersonalizes people. It is marked by a loss of control and choice. One resident lamented, The nursing home's schedule rules my day. I have to eat when they say, whether I'm hungry or not. Then I take naps, go to bed, get up, take baths—all on someone else's schedule. Noninstitutionalized care provides greater control and choice. Such care is demonstrated by fluid, continuous response to real-time choices by residents.

Your and the EHR Team's Charge

The VP is experienced in long-term care and knows that the Vision of Care approach is ambitious and requires innovation and investment. The implementation task force is charged with operationalizing this vision of personalized, community-connected, noninstitutionalized care in a larger framework of person-centered, multidimensional care that promotes dignity. The task force's focus is on staffing and other resources, processes, training, policies, and metrics. It wants the EHR to integrate the recommended resident digital stories; more broadly, however, it wants the EHR to support and actively facilitate the Vision of Care approach. The VP wants to know how your team will design the EHR and how the team will use linked communication technologies for staff, residents, and family to address the following questions.

Case Study Discussion Questions

How will you integrate, in the EHR, the nonmedical information of personalized care that promotes personal interaction and accounts for the personal needs and preferences of individual residents? Who on the staff would be included in learning the digital stories?

How will the EHR support personalized, community-connected care for individual residents? How does the concept of health information exchange relate to that of the hospital EHR?

How will the EHR support noninstitutionalized care, including fluid, continuous staff response to real-time choices by residents?

How will the EHR use linked communication technologies for staff, residents, and family to actively facilitate the resident choice and staff response in question 3? What linked communication technologies will be used?

Additional Resources

American Medical Informatics Association (AMIA): www.amia.org.

Stead, W. W. 2005. Challenges in Informatics. In Building a Better Delivery System: A New Engineering/Health Care Partnership, edited by P. P. Reid, W. D. Compton, J. H. Grossman, and G. Fanjiang, 193–94. Washington, DC: National Academy of Engineering and Institute of Medicine.

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