The Impact of the Global, Extensible Electronic Health Record

With the arrival of the “World Wide Web,” we have witnessed a transition toward a truly global perspective with respect to electronic health records. In recent years, much more discussion has focused on the potential for international virtual electronic health records and what is required for them to become a reality in the world today (Kilman & Forslund, 1997). As the Internet becomes more ubiquitous and Web-enabled, we see access to electronic health records using these technologies becoming more commonplace. Even so, these Web-enabled health records still remain technologically isolated from other medical records in the distributed continuum of care; much of the standardization challenge still stands before us. We have witnessed startling technological advances, but we still face considerable obstacles to the goal of having globally standardized electronic health records. In this chapter we describe some of the issues associated with Web-enabled health records, the role of standards in the evolution of Web-enabled health records, and some of the barriers to the development of globally accessible electronic health records. We discuss possible ways to overcome these barriers and the kinds of benefits and opportunities that global health records will help provide. The global scale perspective makes more evident the very real and potentially tragic consequences of prolonged and unnecessary delays in deploying these technologies. Therefore, in an effort to promote a fuller consciousness of health safety, the chapter concludes with a comparative look at the negative impact of impediments in the movement toward global extensible electronic health records.

The Web-Enabled Patient

The past decade has witnessed major changes in the concepts of health and disease and in the respective role and responsibility of doctors and patients in health maintenance and disease management. These changes were triggered by cost-containment imperatives. Although constraining by nature, these imperatives are also enabling. The original incentive to engage people in taking larger responsibility in their own care was economic. The strategy used to foster commitment to better health was increasing people’s health awareness and making them confident they could modify their behavior, and in so doing reduce their risk for preventable diseases such as cardiovascular diseases (primary prevention) or detect diseases at earlier stages such as cancers (secondary prevention). Only recently, the concept of encouraging people to participate in their own care has been extended to patients with chronic diseases. Here, the objective is to make the patient able to practice self-care in the management of his/her disease, and the incentive is still to reduce the demand for and cost of care. Health promotion, disease prevention and disease self-management all rest on education: systematic education about diseases and risks, practical information on how to adopt appropriate behaviors, and training in self-care skills along with the message that people have the capability to change their behavior and acquire the necessary skills. These changes brought about by economic concerns can be seen as constraining, since they require active self-monitoring and self-discipline. However, as they rely heavily on health information and the development of self-confidence, their unintended consequences, enhanced by the current technology developments, are patient empowerment and a change in the doctor-patient relationship.

Using Web-Enabled Technology to Promote the Adoption of Practice Guidelines

The rapid expansion of scientific knowledge brings increased physician uncertainty in clinical decisionmaking. Clinical practice guidelines have been developed to reduce physician uncertainty. The broad movement to develop and disseminate clinical practice guidelines is rooted in evidence-based medicine. Although the development and dissemination of evidence-based guidelines has increased dramatically over the past decade, studies indicate serious deficiencies in the adoption of guidelines into practice. Developments such as client/server networks, the Internet, and the World Wide Web are rapidly expanding potential educational applications for information and communications technologies and the capacity for introducing strategies to promote guideline adoption. Web-enabled computer technology can enhance the capability of healthcare information systems to reduce variation in clinical decisionmaking.

Web-Enabled Integration of Patient Data and Clinical Guidelines for Coordinated Care

A variety of forces are encouraging change in the healthcare systems of developed countries. Chief among these is perception of high (and rising) cost. The arsenal of tests, medications and procedures at the hands of Western medicine is ever-increasing. This, in concert with an aging population, has brought the health expenditures in the U.S., EU, Japan and Australia edging to just under 10% of GNP. Furthermore, there is concern about waste of resources, principally through lack of coordination between healthcare facilities resulting in redundant investigations. A more subtle force comes from the rise of evidence-based medicine (EBM), as illustrated, for instance, by the extensive consolidated clinical reviews of the Cochrane Collaboration. EBM highlights that typical medical practice is not necessarily efficient or effective in all cases as compared to well-established findings of randomized controlled trials (e.g., Sydney GPs have been observed to over-prescribe antibiotics, which is both a waste and a community health hazard [Bolton et al., 1996]). Happily, as motivations for change rise, we see the emergence of technologies with great promise for implementing solutions. The most obvious of these is of course Web technology. Cimino et al. (1995) illustrated (at a time that can now be considered early in the brief history of the Web) that intranet-based Web technology could provide a breakthrough in ease of integration of legacy information systems within a hospital environment, and thus be the basis for innovative clinical workstations within the hospital walls. More recently Cimino et al. (1998) have illustrated technical solutions to control the security and confidentiality risks associated with external access to the hospital intranet data. Moreover, as one uses an intranet for integration of patient data, they can simultaneously access internal (intranet) and/or external (Internet) decision support resources (such as access to Medline illustrated by Cimino et al., 1995).

Automating Patients Admission

The rationale for using a single case study approach is set out and put into context of current case research literature and thinking. The validity of the approach and its implications for being able to generalise from its findings are discussed. The key point in the case is the determination of a private hospital in Auckland, New Zealand, to re-engineer its processes with information technology. Persisting in the face of apathy and even resistance by its main business partners, they achieved a viable pilot system on a minimum budget, using common, off-the-shelf software and technologies. Starting from a modest electronic presence, the hospital’s aim is to become the centrepiece of an electronic community, offering a rich set of communications and other media for the medical practitioners who use the hospital facilities. The case in this chapter is the history of the first service project, an electronic interface for surgeons to book operating facilities and to automate admission procedures. The process changes and improvements are described, as are the resolution of environmental issues such as security and patient privacy. The architecture of the system, which centres on the basic structure of an intranet, is outlined. A number of points of general import for interactive surgeon-hospital systems are developed from the case in conclusion. Pointers for further and/or follow-up research are given.

Patient-Doctor Interconnectivity

Effective physicians must listen to their patient’s concerns, take accurate and complete medical histories, and earn patient trust and confidence. Physicians must help patients better understand their problems, and clearly communicate treatment recommendations and medical advice. Communication is a cornerstone of medical practice, while poor communication is a major cause of misdiagnosis, poor compliance of therapy, and malpractice claims (Mechanic, 1998). Telecommunication technology has created new lines of communication for patient-physician interaction. Most recently, the global computer network of the Internet has provided electronic mail (email) and the World Wide Web (Web). Email allows for a direct one-to-one communication, and the Web is used mainly as a broadcast medium for dissemination of information in a one-to-many form. Just like the Internet’s predecessor, the telephone, application and research must be done to determine how this new technology can best be used to enhance the patient-physician relationship (Mandl, 1998). The Internet provides an unprecedented level of near instantaneous lines of intercommunication. Web browser technologies provide an interface to the Internet that makes this communication accessible even to novice computer users. The combination of communication and interface technology is an opportunity to explore ways of improving patient healthcare by breaking down current barriers to quality healthcare management. Web-based communications enable a continuous interaction between physician and patients where patients can freely enter data and concerns, and physicians can address these asynchronously. With the resulting additional patient data, physicians get a more complete clinical picture, and, with the aid of trending and decision support tools, the computer can help organize and present data in meaningful ways. Patients gain a sense of partnership in their healthcare through the continuous reporting of data and more immediate feedback. This chapter discusses the design and implementation of a working healthcare management system called “Hypertension Decision Aide” or “HDA”. HDA is a World Wide Web system that provides chronic hypertension patients with data reporting, monitoring, decision support tools, and educational material. HDA provides physicians with the ability to monitor a patient’s progress between visits, view summary data, and review suggestions from decision support tools. Issues of system design, data integrity, patient confidentiality, and security will be discussed in the context of HDA.

UK Primary Healthcare Groups

The UK Information Management Strategy (NHS, 1998) for the period to 2005 envisages the implementation of a Nationwide private network which will support clinical and administrative functions throughout the National Health Service (NHS). Using Web-based technologies, a wide variety of applications will enable rapid communication between professionals. Secondary, acute services and primary care services will be linked in a way that has not been previously possible. Communications concerning hospital appointment booking, referrals, discharges from hospitals, radiology results and laboratory test requests will all be mediated by the NHSnet, producing faster, more accurate communication and increased integration of services. Electronic patient records (EPRs) will be transmitted between general practitioners (GPs) and hospitals, prescription requests will be transmitted to pharmacists, even patients will be able to access information concerning conditions and treatment and communicate with health professionals from their homes. In effect we are observing the potential for technology-enabled change as ‘information powers the NHS’ (Nicholls, 1995). The UK information management strategy provides the foundations for radical changes in healthcare philosophy: shifting the focus of activity to primary care, increasing patient responsibility and involvement in the healthcare process and increasing the information available to healthcare professionals and patients. Thus, an agenda for social and cultural change within healthcare delivery is to be driven by the availability of technical infrastructure (Lenaghan, 1998). It would be naive to consider that the availability of the technology will naturally lead to its acceptance as a communication media or to the required organizational and cultural change. The management of a Web-enabled infrastructure and its Web-based information systems is as much about the management of its social construction as its physical construction. Stakeholders within the health service will have individual perceptions and expectations of the technology which through discussion and interaction within groups will determine the social construction placed upon the technology and ultimately the benefits incurred by its use. This social construction will be significantly affected by the context within which the technology is implemented. Contextual issues may include the attitude of stakeholders and stakeholder groups to the technology, economic drivers which influence the availability of the technology, and previous implementations of information and communication technology. If the implementation of a Web-based communication system throughout the UK NHS is to be successful, the needs of stakeholders and the types of application possible should be matched to produce benefits. The management and delivery of benefits requires an understanding of stakeholders’ interests and the implementation of applications appropriate to those interests. This chapter considers the following questions: Who are the stakeholders involved in a Web-based information infrastructure? What applications are possible? How do we match applications to stakeholders to achieve benefits? In each of these areas a research agenda is developed, Firstly we provide and overview of the technology which will enable a new approach to healthcare communications in the UK.

Disability Access to the Built Environment

Identifying and removing architectural barriers to access for people with disabilities follows community recognition that people with disabilities share the same rights as others. In terms of access to buildings and facilities, it is a question of degree. Examination of the steepness of a gradient, the available circulation space at a doorway, the type, fixation and position of a handrail, the amount of colour contrast and lack of other sensory cues determine degree of compliance. Absence of critical features discriminates against certain users and influences the likelihood of litigation. This chapter presents a methodology for computer-assisted access evaluation, which encapsulates facility features for accessibility auditing, describes a data model representation which capturing relevant information and demonstrates mapping of access audit analysis onto sets of queries via a Web-accessible information system. Thus the Web-accessible information system provides on-line accessibility information, generated from the accessibility database.

Enhancing Knowledge Management in a Multi-Center Clinical Trial by a Web-Based Knowledge Medium

The healthcare industry is essentially knowledge based. The quality and efficiency of work performed in healthcare institutions depends on their ability to both manage internally created knowledge about patients, e.g., healing practices, and available expertise as well as to enrich and integrate it with relevant external knowledge created worldwide by related institutions (pharmacy research teams, international health organizations, etc.). Efficient management of knowledge in healthcare requires, therefore, concepts and solutions for management, cooperation, and sharing of knowledge within and between institutions (Greiner & Rose, 1997). Despite this fact, until now, knowledge management and processing techniques are mainly used in the form of isolated (e.g., expert) systems for very specific domains. The basic processes of knowledge generation and exchange across domains and locations are not supported by integrated information systems. Under the growing pressure on quality assurance and cost reduction, innovative concepts and technologies to support the management of knowledge are increasingly gaining attention from hospital workers, physicians, pharmacists, health insurance companies, and patients. Knowledge management is a systematic approach to improve the way organizations, groups, and individuals handle their knowledge in all forms, in order to improve their effectiveness, innovation and quality. This implies effective creation, capturing, sharing, and managing of knowledge. Several approaches and guidelines for organizing knowledge management (Probst, Steffen and Kai, 1997; Davenport 1998) and technologies, such as organizational memory (Stein and Zwass, 1994; Conklin, 1996) or document-management systems, have been developed in order to guide knowledge management projects and enable knowledge management. The basic feature of these approaches is the focus on specific aspects of knowledge management. They do not provide a holistic approach dealing with all critical aspects of knowledge management (Schmid & Stanoevska, 1998) starting from developing a vision and finishing with a concept for an appropriate technical platform. The complexity of the knowledge management problem in healthcare requires a holistic approach, which integrates conceptual and technical aspects of knowledge management, supports modular and evolutionary development, and considers existing (legacy) internal and external knowledge sources. In this chapter we will introduce the concept of the knowledge medium as defined by Schmid (1999), which goes beyond existing solutions for knowledge management, and will demonstrate its applicability to the healthcare domain through the example of a multi-center clinical trial. The project is a joint effort by the Swiss HIV Cohort Study, the Patient-Oriented Medical Information System Initiative of Walter Fierz, MD, and the Institute for Media and Communications Management, University of St Gallen, Switzerland. In the next section, the Swiss HIV Cohort Study and its requirements regarding data processing and knowledge management will be described. Then, the concept of the knowledge medium as a framework for the design of knowledge media in multi-center clinical trials is introduced. We relate the concept to the application context and describe the implementation of a knowledge medium in the Swiss HIV Cohort Study. Finally, the achieved results are discussed and conclusions with an outlook of further plans are given.

A Decision Technology System to Advance the Diagnosis and Treatment of Breast Cancer

Geographical variations in cancer rates have been observed for decades. Described spatial patterns and trends have provided clues for generating hypotheses about the etiology of cancer. For breast cancer, investigators have demonstrated that some variation can be explained by differences in the population distribution of known breast cancer risk factors such as menstrual and reproductive variables (Laden, Spiegelman, and Neas, 1997; Robbins, Bescianini, and Kelsey, 1997; Sturgeon, Schairer, and Gail, 1995). However, regional patterns also may reflect the effects of Workshop on Hormones, Hormone Metabolism, Environment, and Breast Cancer (1995): (a) environmental hazards (such as air and water pollution), (b) demographics and the lifestyle of a mobile population, (c) subgroup susceptibility, (d) changes and advances in medical practice and healthcare management, and (e) other factors. To accurately measure breast cancer risk in individuals and population groups, it is necessary to singly and jointly assess the association between such risk and the hypothesized factors. Various statistical models will be needed to determine the potential relationships between breast cancer development and estimated exposures to environmental contamination. To apply the models, data must be assembled from a variety of sources, converted into the statistical models’ parameters, and delivered effectively to researchers and policy makers. A Web-enabled decision technology system can be developed to provide the needed functionality. This chapter will present a conceptual architecture for such a decision technology system. First, there will be a brief overview of a typical geographical analysis. Next, the chapter will present the conceptual Web-based decision technology system and illustrate how the system can assist users in diagnosing and treating breast cancer. The chapter will conclude with an examination of the potential benefits from system use and the implications for breast cancer research and practice.