Health informatics

Health Informatics Marie Russell

victoria University of Wellington

J. Michael Brittain Health Informatics Consultant

Introduction This chapter is based in part on reviews of health informatics by

MacDougall and Brittain (1998), and Brittain, MacDougall, and Gann (1996), and highlights some of the dominant issues in the period 1998-2001. In a wide-ranging discussion, we identify current trends and issues in health informatics with examples of applications, particularly in English-speaking countries.

Health informatics deals with the management of health information and the application of information technology to support health services. The chapter reviews recent literature on a broad range of health information, including informatics relating to healthcare practitioners, patients, scientists, managers, caregivers, and the general public. In general the review does not cover medical informatics, which is consid- ered a separate field, although there is some overlap. Medical informatics concerns the use of information technology for medical and scientific research, clinical diagnosis, and treatment. Where the more inclusive nature of health information is concerned, we prefer the term health informatics, as it embraces many subdisciplines and areas.

At the turn of the century, several forces are at work in health informatics. These are not primarily technological, but, rather, interact with

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technological developments. Factors at work include financial restric- tions and resulting changes in the structures of healthcare, concerns about health outcomes and health service quality, the evidence-based medicine movement, changes in the provider-patient relationship, and expanding popular use of information technology, particularly of the Internet. The latter is of course by no means universal. The “digital divide” between the information technology (‘haves” and “have-nots,” identified in the US. by the Department of Commerce’s National Telecommunications & Information Administration (20001, affects health and medicine as much as other sectors. Although health informatics has now emerged as a discipline and practice in its own right- with journals, conferences, professional associations, research, and university-level education programs-the field is derived from computer and information sciences, library science, information management, and some of the social sciences (Brittain, 1997).

The chapter reviews developments under three broad headings: health systems, professionals, and patients; evidence-based medicine and its implications; and e-health. The review concludes with a view toward the future.

Health Systems, Professionals, and Patients

At all levels of national health systems, groups and individuals are grappling with the implications of developments in health informatics. In this section, we review health informatics in relation to governments, health professionals and managers, and patients by considering national strategies, management issues, changes in the provider-patient relationship, information about patients and information for them, informatics in primary care and in nursing, privacy and confidentiality issues, and education and training.

National Strategies Economic restructuring and limits on health spending have led to

reforms in health systems in many countries over the last two decades. Prompted both by the need to limit costs and by rapid technological

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developments, governments have recognized the strategic importance of health information. There has been an increased interest in quality of services and health outcomes; with accountability becoming a pressing issue in the face of scandals in some places, and litigation in others. Where governments provide health services, information technology services a t national and local levels have, over the last fifteen years, commonly been outsourced to private companies. A number of national initiatives are being implemented in such countries, but in the US . no national approach is discernible, in contrast with many European countries and Australasia.

In Britain, the government’s aim in a December 1997 white paper was to build a modern, dependable National Health Service (NHS), with a strong emphasis on quality in the health services. To this end, the concept of clinical governance has been advanced, meaning “a framework through which NHS organizations are accountable for continuously improving the quality of their services and safeguarding high standards of care by creating an environment in which excellence in clinical care will flourish” (U.K. National Health Services Executive, 1999a, p. 6). The concept is underpinned by statutory requirements for accountability and monitoring. These developments follow a period when scandals such as that of the Bristol Royal Infirmary showed some aspects of the British health services to be unreliable and indeed often fatal for patients (Hammond & Mosley, 1999). The publication of tables showing hospital performance has added to pressures for quality improvement. Concern with clinical effectiveness is part of the strategy for best practice using evidence-based medicine.

More directly related to information in the “new NHS” is a seven-year plan (1998-2005) to “provide the right information wherever it is needed in the NHS, from the doctor’s surgery to any hospital accident and emer- gency unit. The strategy will also ensure proper information is available to tackle the causes of ill health and to plan and monitor healthcare” (U.K. National Health Service, 2000c, online). Some areas have their own information strategies, e.g., mental health or cancer. The NHS Information Authority has an interest in “more effective management” and introduction of a National Framework for Assessing Performance. Accurate information for managers and planners is acknowledged as


essential to support improvements and monitoring (U.K. National Health Service, 2000b).

A review seeking to identify the factors associated with success in implementing information technology in the National Health Service found that: Most problems relate to human and not technical factors; work processes must adapt as new technology is introduced, expectations and timeframes must be realistic, involving and training users is crucial, and key technical requirements are flexibility and communication capa- bilities (Bowns, Rotherham, & Paisley, 1999). Outside government circles in the U.K., the King‘s Fund, a London-based charity, has started an independent quality improvement and accreditation organization: Health Quality Service (King’s Fund launches quality service, 1998).

In Canada, the Canadian Institute for Health Information (CIHI) is a federally chartered but independent and not-for-profit organization whose work covers identifying health information needs, collecting and using data, and setting national standards in health information. The CIHI leads the “Roadmap Initiative,” a national vision and four-year action plan to modernize Canada’s health information system, funded by the federal government from 1999 (Canadian Institute for Health Information, 2000).

In 1999 the Australian Institute of Health and Welfare released a strategy for the development of public health information. “A rapidly- growing need for comprehensive and consistent public health information at national, State, Territory and local levels” is identified, with recommendations (Australian Institute of Health and Welfare and National Public Health Information Working Group, 1999, p. iii). These cover three areas: developing public health information capacity, improving its scope and coverage, and improving the use and delivery of public health information.

Hospital Management and Other Large Systems

The impact of information technology developments in large healthcare ventures, such as hospitals, has been mixed. Introducing information technology into large hospital systems has been dogged by difficulties; delivery is often late, the cost is often higher than predicted,


and the system may not deliver the promised functionality. Chandra, Knickrehm, and Miller (1995) identify pitfalls for U.S. healthcare companies when buying information technology: failing to focus on produc- tivity, allowing other players to capture the value created, poor execution, and being tempted to buy pointless gadgetry. Carr (2000) identifies the main reasons for information technology project failures in the health sector as poor management and improper identification of the requirements of the system. This appears to have been the case in a computer project failure in a New Zealand hospital system, at Health Waikato. The project cost over $NZ14 million before being discontinued, with ongoing running costs and system testing expected to cost up to $NZ72 million (New Zealand Health Information Service, 2000). Another example from Australia, and the lessons to be drawn from it, are discussed by Southon, Sauer, and Dampney (1999).

The hospital information system at Geneva University Hospital in Switzerland, DIOGENE, has been under development for over twenty years. It includes four aspects: medico-economic information, patient information, external information (e.g., Medline), and integration of this knowledge in a case-based reasoning format, all available on the provider’s desktop (Borst, Appel, Baud, Ligier, & Scherrer, 1999). A suc- cessful project at Chang Gung Memorial Hospital in Taiwan is described by Chuang, Tan, Wu, and Kuo (1996). Factors accounting for the success include top-level management commitment, cross-functional teams, training and promotion, system reliability and availability, and the right conversion strategy. The chief executive officer’s attitude is also identified as important in a survey of eighty-four Australian hospitals examining the significance of various factors related to the progressive use of information in the hospitals. Hospital size also has a significant positive relationship with the progressive use of information technology (Reeve & Rose, 1999).

Learning from mistakes occurred in a rural community trust in the U.K., where a ten-year-old information management system with handheld computers required staff to enter data that they rarely found use- ful and which also had limited use by management (James & Thomas, 1999). The system was to be replaced and a consultative process with staff was used to ensure that a better system could be introduced. Staff


participation in the process led them to have a new, more positive, and constructive attitude.

Where individual providers, patients, or smaller healthcare systems lack access to information or technological capacity, a “digital divide” can emerge. One example of an information system addressing a rural- urban digital divide comes from Utah where a medical library outreach program teaches information access skills to rural health professionals (McCloskey, 2000).

There are possible adverse effects from the application of new technologies in healthcare for managers and policy makers, according to Rigby (1999), who discusses how information system developments are radically reshaping organizations. Dependence on unverifiable information is part of the problem (Rigby, 1999). In the U.S., according to McGee (1998), healthcare companies have under-spent on information technology systems. A particular challenge is to keep up with government billing requirements.

Changes in the Provider-Patient Relationship Changes in social values, including an increased awareness by

patients that they are consumers, and the consequences of readily available information technology are bringing about changes in the provider- patient relationship. The British Medical Journal has summed up these changes thus: “Patients have grown up-and there’s no going back” (Coulter, 1999, p. 719). Three models of doctor-patient interaction are identified: the more traditional paternalistic model, in which the doctor decides what to do; the informed approach, where the patient decides after the doctor has explained the options; and a middle approach, where doctor and patient decide together in a shared partnership model. The partnership approach is currently favored in official policy in the U.K., although it is unclear if patients and doctors are ready to adopt joint decision making.

Some practical issues of involving patients in decisions about healthcare are discussed by Entwistle, Sheldon, Sowden, and Watt (1998), who believe the processes and outcomes of evidence-informed patient choice are poorly understood, and need careful evaluation. They note two argu- ments in favor of promoting such choice. The first is a moral one in which informed patient choice is seen as desirable, because it is a right.


The second argument rests on hoped-for, but not yet proven, positive outcomes: clinical effectiveness and health gain, improved compliance, reduced expenditure, and reduced litigation. The authors explore the practical and ethical issues that may arise, noting difficulties where patients actively choose ineffective options, refuse to get involved at all, or choose excessively expensive options. Elsewhere, Entwistle, Sowden, and Watt (1998) ask what criteria should be used to judge effectiveness when evaluating interventions to promote patient decision making. They conclude that, when the aim is to improve health status and well being, health outcomes should take priority over process variables such as decision-making behavior and patients’ knowledge. A systematic review of randomized trials of patient decision aids finds that they improve knowledge, reduce decisional conflict, and stimulate patients to be more active in decision making without increasing their anxiety (O’Connor et al., 1999). The authors conclude that the effects on outcomes remain uncertain.

In the U.S., the health informatics community has been urged to develop computer-based applications to support the process of integrat- ing patient preferences with scientific knowledge and clinical practice guidelines, given that computer-based tools have proven acceptable to both patients and clinicians (Brennan & Strombom, 1998).

The impact of the Internet on provider-patient relationships is pro- found (see, for example Eberhart-Phillips et al., 2000; Jadad, 1999). Access to the Internet gives patients an increased level of knowledge, enabling them, if they wish, to participate as partners with providers. But improvements could be made by increasing collaboration between consumer groups and professional organizations; understanding more precisely how patients and doctors use the Internet; making access to the technology easy and fast, with relevant, valid, and engaging information available; balancing electronic and face-to-face interactions; ensuring equitable access; and balancing privacy and connectivity (Jadad, 1999). Quality control of information on the Internet is likely to remain a formidable problem for the foreseeable future.

Consumer Health Information As patients seek more involvement in their own healthcare and

providers thrust more responsibility onto patients, consumer health


information has expanded greatly. The sources of consumer health information are many and diverse: medical reference works; articles in medical periodicals; healthcare providers’ information on services; leaflets, books, personal advice from consumer and self-help groups; television and radio programs; popular magazines; and Web sites. Some questions that arise are: what services exist and where they are delivered, who is able to access them, and what are the quality of information and its effect on the provider-patient relationship both immediately and in the long term? Finally, there are vexing legal issues regarding responsibility for quality and use of information.

A major concern in the area of healthcare is the question of what happens in the information transfer or exchange between provider and patient. What has been conveyed and what has been understood? h m s of consumer health information include improving patients’ understanding and compliance with treatments, and reducing their stress and anxiety. In this section, we discuss some national programs for disseminating consumer health information, ways of evaluating information, and legal implications. In Britain, NHS Direct, a twenty-four- hour nurse-led telephone service for information, gives advice about health, illness, and health services (U.K. National Health Service, 2000a). The New Zealand equivalent, Healthline, started in 2000. Sites like NHS Direct Online in Britain, launched in 1999 as an extension of the NHS telephone advice service, provide a gateway to health information on the Internet. Yet many patients get their information from sources other than the Internet, the most obvious being health professionals. They are not always willing to hand over written information to their patients, however, for various reasons (Entwistle, Sheldon, et al., 1998), although the information might benefit patients (Entwistle & Watt, 1998). Entwistle and her team have also described the experience of the NHS Centre for Reviews and Dissemination in developing information materials for consumers (Entwistle, Watt, et al., 1998).

Sources of consumer health information may be based in public libraries or shopping malls. In the U.S., the National Library of Medicine has tried to work with public libraries to provide health information. An evaluation showed a definite need, as health information was in the top-ten or top-five topics of interest to library users (Wood et al., 2000). A study of a high-street consumer health information shop


serving a widely dispersed population in the Scottish Highlands found that most people were looking for information about a specific personal health problem. This service was well used by all social classes (Barker & Polson, 1999).

In the U.S., a public-private partnership has proposed a National Patient Library of evidence-based health information intended to identify and vet information for consumers (Lerner, 1998). Already in existence for many years is Medline Plus, a service of the National Library of Medicine, which provides health topics, drug information, dictionaries and directories, as well as other information (Medline Plus, 2000). Also in the U.S., a Web-based clinical trials register designed for patients became available in 2000 (Clinicaltrials.gov, 2000). The trials listed are primarily those sponsored by the National Institutes of Health, but in the later stages of this new project, trials sponsored by other governmental and private organizations are to be included (McCray & Ide, 2000).

But what of the quality of consumer health information? In Britain several initiatives seek to enhance quality. The Centre for Health Information Quality (ChiQ) was set up in 1997 as part of the National Health Service’s Patient Partnership Strategy. Appraisal of consumer health information is only one of its activities; recently it has worked with the National Institute of Clinical Excellence (NICE) on developing patient information to complement clinical guidelines the Institute had developed for professionals. Extensive databases and links to recommended sources are available from the Centre for Health Information Quality. According to ChiQ, good patient information exhibits three elements: It must be clearly communicated, involve patients, and be evidence based (Centre for Health Information, 1999). From the consumer’s point of view, more may be needed: According to Oliver (ZOOO), information about the social and emotional aspects of health is often missing in the materials professionals use. An overview of consumer health information services and activities is provided by Gann (1997).

DISCERN, a short instrument enabling patients and information providers to assess the quality of written information about patient choices has been developed by Charnock, Shepperd, Needham, and Gann (1999). The authors claim that DISCERN is the first standardized quality index of consumer health information. The tool also facilitates pro- duction of new, high-quality, evidence-based consumer health


information. Although some subjectivity is required in ratings, it com- bines qualitative methods and a statistical measure leading to consensus across raters. Three of the authors elsewhere advise professionals on how they can help patients find good quality information (Shepperd, Charnock, & Gann, 19991, listing recommended tools and offering advice on quality appraisal instruments such as those for readability. Some of the uses of DISCERN (ZOOO), which is available on the Internet, are described by Charnock and Shepperd (2000).

For a specific disease state, Gustafson et al. (1999) have tested an in- home computerized system providing information, decision support, and contact with experts and other patients. The Comprehensive Health Enhancement Support System (CHESS) was tested on HN-positive patients and shown to improve patients’ quality of life and promote more efficient use of healthcare. CHESS has also been used for other condi- tions, including substance abuse, sexual assault, and for women with breast cancer. Feasibility and pilot studies, and some randomized control trials have been carried out, showing benefits. More information is available about the development and applications of the system (Comprehensive Health Enhancement Support System, 2000).

Healthcare consumers, however, may be seeking information not only about healthcare, but also about health services and providers. A U.S. Internet-based consumer health information service has developed for- mulae for rating hospitals, physicians, and health plans from publicly available data (Morrissey, 1999). This may concern providers whose livelihoods could be enhanced or threatened by such information.

Also in the US., the legal implications of consumer health information on the Internet are explored by Keltner (1998). The Clinton administration promoted networked health information as a means of lowering health costs while improving citizens’ health. Managed care organizations and private health information providers use the Internet to con- vey consumer health information, but the legal standing of providers and consumers concerning the accuracy, timeliness, and integrity of that information is unclear. Law modifications and enforcement to promote standard practices are needed. The area is complex: Who, for instance, is responsible if technical glitches lead to consumer harm? Legal changes need to be accompanied by education about the appropriate use of Internet information. According to Lewis (1999), research is needed


regarding cost-benefit analyses of computer-based patient information and the impacts of such technologies on health outcomes over time.

Patient- Generated Data--Electronic Medical Records

Information from a patient’s medical records or clinical documentation about a patient may have many forms: textual, numerical, or images such as X-rays. Details included may cover the individual’s or family’s medical history, symptoms, diseases, diagnoses, therapeutic and drug treatments, and the like. This information is of use both in the treatment of the individual patient and in medical teaching and research in epidemiology and medical audits.

Technology is available to use multimedia electronic medical records containing textual, numeric, imaging, audio, and signal-based compo- nents, available across the diverse sites where a patient might use medical services. These sites include the family doctor, hospital specialists, ancillary health providers, residential care, and laboratory or diagnostic services (Lowe, 1999) and encompass clinical, financial, and administrative information (Doyle, 1998).

The potential of electronic medical records includes the possibility of reducing costs while improving quality of care, but after decades of effort developing technology, the use of electronic medical records remains a challenge. In many places, very basic technologies may be in use. In New Zealand, for example, an assessment suggests 30 percent to 40 percent of general practitioners use at least some form of electronic medical record (Schloeffel, 1999). The potential of electronic medical records is by no means fully exploited. A survey of U.S. healthcare executives in 1998 showed that only 2 percent had fully operational electronic patient records systems in place (Serb, 1998). The absence of portable generic electronic patient records is one difficulty, and it illustrates the continuing gap between the potential and the reality of electronic medical records (Lowe, 1999; Retchin & Wenzel, 1999; Terry, 1999).

Other developments in health services await fully implemented electronic medical records systems. Quality-inspired initiatives using integrated care pathways in the U.K. National Health Service may be


frustrated by barriers to the implementation of electronic medical records (Norris & Briggs, 1999).

Barriers to widespread use of electronic medical records are legion: software problems of codification and data entry, security and privacy issues, lack of integrated delivery systems, professional reluctance or resistance, and prohibitive costs, especially where there are no economies of scale (Retchin & Wenzel, 1999; Terry, 1999). The slow uptake of electronic medical records systems and consequent inability to access longitudinal patient care information are as frustrating to commercial interests as they are to medicine and healthcare management (Doyle, 1998). In the U.S., the Medical Records Institute has devised a conceptual framework to accelerate the implementation of electronic health records, which requires work on several fronts including information modelling, standards, legal and regulatory issues, poli- cies, the requirements of different medical specialties, and patient issues (Medical Records Institute, 1999). An effort to develop an international code for electronic medical records is reported by the College of American Pathologists, which is working with the U.K.'s National Health Service on a unified computerized coding system (Agreement signals milestone, 1999).

In Australia, a major government-commissioned report on patient records was released in 2000. The report by the National Electronic Health Records Taskforce proposed setting up a national health information network. The necessary building blocks and other issues were fully explored, and the report was endorsed by ministers in July 2000 (Australia National Electronic Health Records Taskforce, 2000).

Primary Care General practice increasingly entails computer support. In Britain,

most general practices have been computerized: over 80 percent in 1998 (Brown, 1998). In New Zealand, 75 percent of all general practitioners use some form of electronic communications on a daily basis (Bowden, 2000). Internet use among New Zealand's general practitioners is fre- quent: 68 percent of those surveyed said they used the Internet at least monthly, and 71 percent had patients who indicated that they sought medical information from the Internet (Eberhart-Phillips et al., 2000). In Australia, where a general practice computer system was developed


in 1997 (More & Clarke, 1999), value may be added to encompass services such as prescription support and tracking; online access to phar- maceutical information; links t o international electronic medical libraries; patient advisory services and Web sites, news, and discussion groups; and continuing medical education programmes (Carlile & Sefton, 1998). An Australian survey concluded that there may be a positive relationship between quality, general practice, and computerization (Bolton, Douglas, Booth, & Miller, 1999). Cork, Detmer, and Friedman (1998) have prepared and tested an instrument to assess physicians’ use of, knowledge about, and attitudes toward computers.

Quality and accountability in healthcare could be greatly enhanced by using information technology for supporting clinical guidelines, according to Owens (1998). Shiffman, Liaw, Brandt, and Corb (1999) review studies of computer-based guideline implementation systems and find a number of key characteristics. Adherence to guidelines improved in fourteen out of eighteen systems where it was measured, and there are other benefits as well. A trial reported by Lobach and Hammond (1997) finds that clinicians’ use of a clinical guideline increases if there is a decision support system generating a customized protocol for the individual patient. From Finland, a descriptive study of how physicians use a computerized collection of guidelines for primary care (Jousimaa, Kunnamo, & Makela, 1998) shows that users average 3.12 searches a day, and that sufficient facts were found in 71 percent of the searches. The average time needed to find and read an article was 4.9 minutes, with the main areas of interest being dermatology, infectious diseases, and cardiology.

Interactive computer technology applications, like multimedia kiosks, the Internet, and handheld digital devices, have the potential to assist in family practice, according to Glasgow, McKay, Boles, and Vogt (1999). Combined with behavioral science principles, these technologies can help with patient self-management, for example, of chronic disease. How general practitioners are to find time to explore the use of new technologies is unclear. The information overload syndrome is outlined by Noone, Warren, and Brittain (1998, p. 287) who see the future challenge as one of presenting the “vast array of information sources to the GP in an acceptable and useable information system interface.”


Does general practitioner computing make a difference to patient care? Ellis and May (1999), assessing the use of desktop computing in primary care, suggest that, while there have been advances in primary care administration, the evidence for improvements in patient care is mixed. Kidd and Mazza (2000) point out the potential for incorporating the use of clinical guidelines with the use of electronic patient records in Australia, now that most general practitioners there are using computers. Sullivan and Mitchell (1995) conclude from their review of thirty studies that the impact of the computer system includes lengthening the consultation times, and tends to increase the amount of time doctors speak. Computer systems are associated with more uptake of targeted preventive services, decreased time and costs associated with repeat prescribing, and increased generic prescribing. Patient satisfaction is not affected. In a more recent review on effects of electronic communication in general practice, only a few studies reported improvements over paper communications (van der Kam, Moorman, & Koppejan-Mulder, 2000). An Australian study of discharge communications finds no good evidence to suggest that information technology could improve the quality of these communications between hospitals and primary care (Bolton, 1999).

Nursing Informatics Nursing informatics is a branch of health informatics that has been

recognized since 1992 by the American Nurses Association as a nursing specialty (Simpson, 1998a, 199813). The broad range of areas addressed in nursing informatics is evidenced by the program of a recent nursing informatics conference (International Nursing Informatics Congress, 2000). The role of an informatics nurse is discussed by O’Reilly (1998), who sees the informatics nurse as equally competent in the clinical and technical languages and acting as an intermediary between the medical and the information technology worlds. Simpson (1998a, p. 22) notes that “computers and technology won’t ever truly replace nurses but there’s certainly no advantage to nursing without technology.”

Reviewing types of nursing record systems, Currell, Wainwright, and Urquhart (2000, p. 2) note that “nurses have long been recognised as key collectors, generators and users of patientlclient information . . . the exchange and transfer of information is a significant nursing activity.”


They ask how different types of nursing record systems affect nursing practice and healthcare outcomes, given that there has been considerable investment in computerized nursing information systems, whose benefit to patients is not established. The review shows no evidence of effects on practice that are attributable to changes in record systems, although the quality of existing research is questioned.

Simpson (1998a, 1998b) identifies reasons why nurses in the U.S. are not “technologically savvy”: The health services have focused on cost rather than value of technology; research funding is limited and the edu- cationawtraining infrastructure is inadequate. Ballard (1999) concludes that nurses need special informatics education and training to meet the requirements of their work.

Privacy and Confidentiality A perennial concern about the application of information technology

in healthcare has been its impact on patient confidentiality and privacy issues. In the U.S., privacy of automated personal health data has been debated since 1974. In a review of that debate, Freeman and Robbins (1999, p. 317) discuss the 1996 law that mandated a unique identifier for each participant in the U.S. medical care system and the use of a uni- form data set for all health information transmitted in financial and administrative transactions. The authors believe that anxieties about privacy must be openly addressed “in a time of cynicism about government and discomfort with corporate medicine.” The U.S. Congress failed in 1999 to meet its self-imposed deadline to enact comprehensive confidentiality legislation (Tang, 2000). Beyond healthcare, personal medical information is bought and sold on the open market, according to Etzioni (1999) in a recent review. Companies purchase such information for hir- ing and firing and to identify potential customers.

Some specialties address their own patient privacy issues, both out of concern for patients and to limit their own liability. The American Academy of Pediatrics (1999) lists pediatrician responsibilities and notes the competing interests in the privacy issue: the health needs of the community, the rights of the patient, and the ability of the pediatrician to provide quality care.


Education and Training The implications of enormous change in healthcare information

include a new focus needed in primary and continuing education, according to Carlile and Sefton (1998). The focus should move from delivering content to developing the ability to manage the changes that are occurring. Investment in information technologies is not always accompanied by sufficient education and training of staff for the development, implementation, and operation of new systems (Brittain & Norris, 2000). In Britain, planning for health informatics services has been required as a key component of local information strategies in the government’s Information for Health policy since 1998, although it is recognized that the needed skills are in short supply (U.K. National Health Services Executive, 2000a). Norris and Brittain (2000) review the health informatics education and training scene in the U.K. and also note some international activities. In particular, they cite the increasing tendency for providers of health informatics education and training to collaborate internationally, rather than to compete, as they have done in the past.

Evidence-Based Practice and I ts Imp I ica t i ons

The evidence-based medicine movement is now well established as one of the driving forces in healthcare. “Evidence-based medicine is the conscientious, explicit and judicious use of current best evidence in making decisions about the care of individual patients” (Sackett, Rosenberg, Gray, Haynes, & Richardson, 1996, p. 71). Failure to learn from available evidence has caused delays in the introduction of effective healthcare measures, and allowed the continued use of ineffective or even dangerous measures (Cochrane Collaboration, 2000). The search for evidence involves efficient literature searching, and the systematic review, evaluation, and meta-analysis of the clinical research literature.

A key approach is epitomized by the Cochrane Collaboration. In 1972, Cochrane argued that only findings derived from blind randomized control trials would provide valid evidence for the effectiveness of healthcare procedures (Cochrane Collaboration, 2000). On this basis, the Cochrane Collaboration, an international organization that aims to help


people make well-informed decisions about healthcare by preparing, maintaining, and ensuring the accessibility of systematic reviews of the effects of healthcare interventions, was founded in 1992. The Cochrane Collaboration has nine principles:

Collaboration Building on the enthusiasm of individuals Avoiding duplication Minimising bias Keeping up to date Ensuring relevance Ensuring access Continually improving the quality of its work Continuity

(Cochrane Collaboration, 2000).

On topics where there is low or little consensus, however, such systematic review may not be helpful. Even where there is plenty of information, the challenge of deriving treatment guidelines may be problematic. Meta-analysis, where the results of earlier studies are pooled and analyzed using various statistical tools, is not straightfor- ward, for example, where there are contextual differences between the contributing trials-as there often are (Freemantle, Mason, & Eccles, 1999). Goodman (199813) cautions against making decisions based on the results of meta-analysis.

Not all providers are comfortable with the current approaches in evidence-based medicine. Buetow and Kenealy (2000) advocate a wider definition of evidence-based medicine through acknowledgment of the multiple dimensions of evidence, including, among others, expert evidence and theoretical evidence. Certainly for nurses, Rolfe (1999) claims evidence-based medicine’s promotion of the randomized controlled trial as the “gold standard of evidence may be too narrow. What counts as evidence should be rethought in light of nursing’s distinctive approach. These views questioning the evidence-based medicine approach were foreshadowed by Knotterus and Dinant (1997), who emphasized the importance of clinical reality in the practice of medicine.

Domenighetti, Grilli, and Liberati (1998) propose that pressure should come bottom-up from patients to doctors for evidence-based


medicine, and suggest how this consumer demand could be promoted. An aspect of the Cochrane Collaboration that is regrettably uncommon is its stress on consumer involvement. Membership is open to all. The Cochrane Library is an electronic one, and Cochrane reviews online are subject to comment and improvement by means of an iterative system. Both online and manual searching, across all languages, are carried out for Cochrane reviews. Traditionally, the Cochrane approach dealt with reviews of a limited number of treatments, for example, a particular surgical or drug intervention, and limited permissible evidence to randomized control trials. Now, the Cochrane Effective Practice and Organisation of Care Group (EPOC) takes a rather different approach. EPOC is a group under the Cochrane umbrella that works on reviews of organizational healthcare interventions-those that involve a change in the structure or delivery of healthcare (Cochrane Effective Practice and Organisation of Care Group, 2001).

A criticism of the zealotry evident among many proponents of evidence-based medicine was seen at a 1999 conference reported by Bastian (2000, p. 18). A “post-EBM” agenda may involve a “new, widespread, far more critical attitude to the phenomenon on EBM,” one that recognizes the varying human values underlying so-called scientific objectivity. Because the movement relies on the “enthusiasm of individuals,” values are prominent. One problem, for those with an interest in equity, is that evidence-based medicine’s emphasis on effectiveness and efficiency does not help in overcoming social and economic disadvantage.

Fin ding In forma tion The evidence-based practice movement places new importance on

retrieving information. It is one thing to have information available, and quite another to find it. Allison, Kiefe, Weissman, Carter, and Centor (1999) identify finding information (in this case, from MEDLINE, the excellent database of records of articles from biomedical journals, dating from the 1960s) as both an art and a science. In investigating how well physicians used electronic information retrieval systems, Hersh and Hickam (1998) developed a conceptual framework for assessment. According to Hersh and Hickam, most use of information retrieval systems is with bibliographic, rather than full-text databases, and overall use of such systems averaged from 0.3 to 9 times per month even though


physicians had two unanswered questions for every three patients. Moreover, not all information physicians need is published in journals: Hersh and Price (1998) review means of identifying randomized control trials in conference proceedings abstracts.

The Internet provides a rich source for tracking evidence, and tools to guide the searcher are available. The School of Health and Related Research at the University of Sheffeld in Britain, for example, offers “Netting the evidence: a ScHARR introduction to evidence-based practice on the Internet,” which lists and annotates hundreds of sites, not only in English (Netting the evidence, 2000). Also in Britain, the British Medical Association (2000) suggests sources and the National Electronic Library for Health (NeLH) aims to keep health professionals up to date with the latest clinical research and best practices as these are needed (U.K. National Health Services Executive, 1998, p. 168). The NeLH is organized into four “virtual” floors of information: the patient and public information floor (involving Centre for Health Information Quality [ChiQ, see earlier]); the know-how floor, developed with the National Institute for Clinical Excellence; the knowledge floor, involving the healthcare library community; and the knowledge management floor, developed with British education and training programs and the medical informatics world (National Electronic Library for Health, 2000).

Not all information resources available are textual. The Visible Human project (U.S. National Library of Medicine, 2000), for example, is a digital image library of volumetric data representing complete nor- mal adults, male and female. Indexing images in multimedia medical information poses additional problems. Tang, Haska, and Ip (1999) review intelligent content-based indexing and browsing of medical images and describe the I-Browse project, which aims to develop tech- niques enabling a physician to search over image archives through a combination of semantic and iconic representations.

Using Information Identifying evidence is only half of the challenge. Provision of evi-

dence-based medicine and best practice protocols in the workplace at the point of care is being addressed in different ways. Bero et al. (1998) review ways to implement research results in practice, and find that the specific strategies that work best are educational outreach visits,


reminders, multifaceted interventions, and interactive educational meetings. Anderson, Burrows, Fennessy, and Shaw (1999) describe an “evidence centre” in an Australian hospital setting. The Centre for Clinical Effectiveness in Melbourne, set up in 1998, finds and evaluates the best available evidence in response to requests from clinicians. Meanwhile, a pilot project in the U.K., e-STABLISH, provides improved access to evidence-based information sources for primary healthcare workers in their workplaces (Farrell, Cunningham, Haigh, Irozuru,, & Cuffin, 1999). The major barrier to practicing evidence-based medicine in a survey of British GPs is lack of personal time (McColl, Smith, White, & Field, 1998). A later qualitative study suggests that, in fact, many GPs may not share the central assumptions of the evidence-based medicine paradigm (Tomlin, Humphrey, & Rogers, 1999).

Having information about the patient and other sources of information readily and seamlessly available at the point of healthcare delivery has long been seen as ideal. A clinical workstation that facilitates easy access to these information sources is still not achievable, however, while com- ponents such as the electronic patient record are not fully available or in use. Goncalves, Steele, Franks, and Wilson (1999) have tried to develop a ward-based clinical workstation to support evidence-based medicine, using Web-based technology, and their evaluation finds high acceptabil- ity both of the user interface and of the concept of a clinical workstation that gives access to patient-specific data and reference sources.

Miller and Goodman (1998) define medical or clinical decision support systems as computer programs that assist healthcare providers in decision making. In studying the ethics of using such tools, the authors ask when and how these systems should be used, and also what their impact is. One of the most common types is reminder systems, where certain events in patient care trigger reminders to the healthcare professional to take particular actions or avoid others. Reminder systems may be on paper (generated manually or by computer) or on-screen; four reminder subtypes are identified by Gorman et al. (2000): cue sheet, checklist, patient profile, and profile checklist. In a review of 98 trials, Balas et al. (1996) find that physician and patient reminders- among other ingredients of computerized information services-could make a significant difference in family medicine. A meta-analysis of trials to evaluate computer-based clinical reminder systems for preventive


care in the ambulatory setting finds that the systems are effective in improving preventive care (Shea, DuMouchel, & Bahamonde, 1996). A systematic review by Hunt, Haynes, Hanna, and Smith (1998) supports the finding regarding preventive care, and notes that clinical decision support systems can also enhance performance for drug dosage and other aspects of care, but do not convincingly improve diagnosis.

E-Health The use of readily available, popular information technology systems

is having considerable impact on how consumers and providers relate to each other, and on the ways health services are delivered. This section discusses the Internet, the use of e-mail, and aspects of telemedicine.

lnternet The move to patient responsibility discussed earlier goes hand-in-

hand with the development of electronic means of communication, particularly the Internet (McLellan, 1998).

It is estimated that one billion people are connected to the Internet. In countries such as Finland and Norway, approximately one half of the population has Internet access. In the year 2000, the number of people searching for health information seemed to outstrip even those looking for sex information: One assessment suggested that health information was sought 34 percent of the time (Medical Records Institute, 1999). From 36 percent (Kiley, 1998, p. 202), 40 percent (Eberhart-Phillips et al., 2000) to nearly half (McLellan, 1998, p. 39) of Internet users surveyed had recently accessed medical and health sites.

While the amount of erroneous information on medical and health matters available on the Internet is alarming, it is not the only source of poor advice to patients. Popular printed information and hearsay may be similarly unreliable.

Codes of conduct for medical Web sites and guidance on evaluating the quality of health information sites are noted by the Centre for Health Information Quality (CHiQ). A guide to healthcare on the Internet rates top Web sites and directories of online resources (Guide to healthcare on the Internet, 1999). This type of guide has been studied in a review of published criteria for evaluating health-related Web sites


(Kim, Eng, Deering, & Maxfield, 1999). The reviewers found 165 criteria in twenty-nine published rating tools, noting that most of the authors agreed on the key criteria for evaluating health-related Web sites. The most frequently cited criteria dealt with content, design and aesthetics of sites; disclosure of authors, sponsors, or developers; currency of information; authority of source; and ease of use.

An International e-Health Code of Ethics has been developed by the Internet Healthcare Coalition, with guiding principles covering candor and honesty, quality, informed consent, privacy, professionalism, responsible partnering with other sites and organizations, and accountability in healthcare professionals’ provision of care via the Internet (Internet Healthcare Coalition, 2000). This organization has now developed a consensus agreement with others who have also worked on Web site accreditation: the Coalition for Health Information Policy and the American Accreditation Healthcare Commission (American Medical Informatics Association, 2000).

De Groen, Barry, and Schaller (1998) describe an unusual research use of the Internet. They have developed a means of studying patients with rare diseases. As trials of rare diseases are almost impossible to conduct, the authors designed a computerized disease tracking system coupled with a database accessible on the Web. This enabled them to track the patients, their symptoms, and treatments. There are applications in clinical research and practice and coordination of multicenter trials.

Patients who seek information that meets social or emotional needs may find much on the Internet. Pathographies or narratives of illness, not subject to editorial scrutiny, are readily available (McLellan, 1998), as are online support groups. Concerning these, Goodman (1998a, p. 12) describes the problem, “not that free people are taking control of their own healthcare; it is that ignorant people or people misled by unrealis- tic hope will mistake comfort or gossip for skilled medical, nursing, or psychological help.”

E- Mail While the Web allows technology-rich patients to tap into a huge range

of health information, e-mail enables two-way communication across distance between doctor and patient. Nearly half of the U.S. patients already using online health information reported in a 1999 survey that

Health informatics 613

they wanted contact with their physicians by e-mail, but only 3 percent were actually doing so, and only 11 percent had their physicians’ e-mail addresses (Physician-patient e-mail underused, 1999). The advantages of using e-mail for doctor-patient communication include increased access, advancing patient education, and improving compliance with treatment. Reluctance on the part of doctors to communicate with patients by e-mail is understandable: There are many pitfalls with potentially serious consequences. Doctors may well fear being overwhelmed by e-mail communications from patients, and being unable to respond to requests. In 1998, Mandl and his colleagues identified areas of concern, some of which have been ameliorated by technological advances (Mandl, Kohane, & Brandt, 1998). The inappropriate use of e-mail, as when face-to-face or telephone contact is actually necessary, or in emergencies, is of concern. Security and confidentiality issues, given that “most violations of the confidentiality of electronic data are committed by authenticated persons’’ (Mandl et al., 1998, p. 4971, and medico-legal issues may worry both patients and doctors. E-mail’s ability to generate paper copies can be positive for record- keeping, but may increase physicians’ liability. Equity in healthcare access and outcomes may be threatened when technology-advantaged patients can contact their doctors by e-mail, while poor, nonnative speakers or illit- erate patients cannot.

Attempting to grapple with some of these issues, the American Medical Informatics Association has developed guidelines for the clinical use of electronic mail with patients. The guidelines tackle “two interrelated aspects: effective interaction between the clinician and patient and observance of medicolegal prudence” (Kane & Sands, 1998, p. 104). The guidelines cover negotiation and agreement between patient and provider, handling of messages, medico-legal issues, and other matters.

Telem edicin e Telemedicine is variously defined (Currell, Urquhart, Wainwright, &

Lewis, 2000; Goodman, 1998a; Grigsby & Sanders, 1998; Murdoch 1999; Paul, Pearlson, & McDaniel, 1999; Thrall & Boland, 1998; Wallace, Wyatt, & Taylor, 1998; Watts & Monk, 1999). Some prefer the term “distance medicine” (Balas et al., 1997). The definitions suggest a combination of three essential elements: healthcare, distance, and communications


technology. Two modes are identified: real-time systems and store-and- forward systems (Wallace, et al., 1998). The American Telemedicine Association’s (2001, online) definition of telemedicine is “the use of medical information exchanged from one site to another via electronic communications for the health and education of the patient or healthcare provider and for the purpose of improving patient care.” However, as with electronic medical records, there is a gulf between the potential and the reality in telemedicine. The utilization rates for telemedicine projects are “falling well below expectations,” even while there is growth in new installations (Paul et al., 1999, p. 279).

Of course, the use of telecommunications in healthcare has a history as long as that of the telephone; currently, interest is in the transmission of images and other information for diagnosis and care. Much is made of the potential for live, interactive telemedicine, such as consulting between the patient and family in one place and healthcare providers in another through videoconferencing, as described by Murdoch, (1999). But in fact, according to Reich-Hale, (1999), most telemedicine is done on a desk-top, and is mostly of the store-and-forward type.

Telemedicine is used in remote areas, by the military, and for screening. It is commonly used in certain of the more visual medical specialties, including radiology, cardiology, dermatology, and ophthalmology. “The only things a doctor can’t do with telemedicine is touch and smell. With a trained nurse, this can be taken care of as well” (Reich-Hale, 1999, p. 35). Home healthcare is asserted to be the fastest-growing service in telemedicine. Gaining expert opinion for primary care workers in both developed and developing countries is another application of interest (Murdoch, 1999; Pal, 2000; Thrall & Boland, 1998).

Advantages summarized by Wallace et al. (1998) include equitable access for remote areas, home care for the elderly, cost savings with reduced clinician and patient travel, and reduced professional isolation. Disadvantages include danger of incomplete information and technological failure, demands on clinicians’ time, and cost. Examples of applications include Internet-based home monitoring for asthma patients (Finkelstein, Cabrera, & Hripcsak, 2000).

Balas et al. (1997) review eighty trials of computerized communication, telephone follow-up and reminders, and other telephone-based contacts between professionals and patients. These technologies are found


to be beneficial in preventative care, and in the management of patients with osteoarthritis, cardiac illness, and diabetes. More continuity of care, improved access, and coordination of care are achieved with the technologies. A recent systematic review finds little evidence of clinical benefits in telemedicine versus face-to-face patient care, and while the authors recommend more research, they caution against increased investment in unevaluated technologies (Currell, Urquhart et al., 2000). The cost-effectiveness of telemedicine has not yet been demonstrated (Balas et al., 1997; Grigsby & Sanders, 1998). The cost benefits for patients must be balanced against increases in costs to providers (Hakansson & Gavelin, 2000).

Norway is among the most advanced countries when it comes to telemedicine, with an emphasis on distance learning. There, recent trends are less toward videoconferencing, focusing more on asynchro- nous medicine (Murdoch, 1999).

Important considerations to be addressed in telemedicine are quality of the transmission technology, quality of images to be transmitted, changes in provider-patient relations, and technology availability (Murdoch, 1999). Research on video linking in Britain suggests that high quality sound is of prime importance; also, the remote consultant needs to see the faces of the patient, the accompanying consultant, anyone else in the room; all the parties need to work from the same image of the problem; facilities for remote pointing are desirable; and patients feel more confident when they can see and hear the remote consultant (Watts & Monk, 1999). Mair and Whitten’s (2000) systematic review of research into patient satisfaction with real-time interactive video was inconclusive. The authors found a paucity of data examining patients’ perceptions or the effects of the method on provider-patient interaction.

Online consulting is developing rapidly, according to the founders of Doctor Global in New Zealand. They claim Doctor Global is pioneering e-health, and that the service provides one-on-one Internet medical con- sultations. “Our doctors and other health professionals practise from virtual ‘e-Clinics’ which encompass a growing range of medical specialties” (Doctor Global, 2000, online). The advantages for practitioners include working at a time and place they choose.

Telemedicine cannot wisely be promoted in isolation from other uses of healthcare technologies, according to an Australian study (Mitchell,


2000). A 1999 national study of telemedicine there led to promotion of the concept of e-health, the health sector’s equivalent of e-commerce. When telemedicine is used as part of an integrated use of telecommunications and information technology, it is more cost effective.

The barriers to telemedicine’s development include technological, legal, and social factors:

Lack of end-user and technical training Poor sound quality The gap between the sophistication of the technology and the end-users’ needs for clinical activity Danger that healthcare is technology led Medico-legal issues and professionals’ liability Licensure; this is a particularly serious issue in the U.S., where each state is responsible for licensing healthcare practitioners, and practicing telemedicine from across state borders may be illegal Reimbursement; in the U.S., for example, Medicare will reimburse for teleradiology, but generally not for other telemedicine Patient confidentiality and privacy cost Provider and patient resistance

(Edlin, 1999; Grigsby & Sanders, 1998; Paul et al., 1999; Reich-Hale, 1999; Thrall & Boland, 1998; Wallace et al., 1998)

What Does the Future Hold? Writing about health information systems in ARIST a decade ago,

Tilley (1990) noted some of the changes occurring at the time. People expected information to be at their fingertips, and health professionals were starting to do their own online database searching. She wisely predicted that “new discoveries and implementations will accelerate as we approach the year 2OOO” (Tilley, 1990, p. 355). She could not have fore- seen in detail the Internet explosion and its implications.

More recent writers are cautious about predictions, although Fletcher and Fletcher (1998) are prepared to predict that general medical journals,


whether paper or online, “will continue to occupy a central place in medicine, despite increasing specialization.” The new journals that summarize existing information will rise in importance. Since there were estimated to be about 16,000 serial medical journals in 1997, there is definitely a place for distillation of their information (Rennie, 1998). Kastin and Wexler (1998) foresee the availability of the full text of all journal articles and textbooks online, including images and tables, and more e-journals that have no printed counterpart. There is a price, though, with the loss of serendipity in library stack browsing.

Finding the right information will remain a central activity. According to Payne (2000, p. 16), “much valuable clinical data is unstructured,” and tools are being developed to use much more refined and “intelligent” “concept agents,” rather than keyword searches for searching unstructured content.

New kinds of information in the health sector are becoming available. Genomic databases are increasingly likely to develop, for example. This has already occurred in Iceland, where there is a genomic database containing genetic profiles of most of the 275,000 inhabitants (Cerberus, 2000).

Technology issues dominated health informatics in the 1980s and early 199Os, and there were many failed systems and disappointments. During the last decade, however, there has been an increasing emphasis on service and conceptual issues; thus widening the horizons and indi- cating to a greater range of health professionals, governments, and healthcare consumers the relevance of health informatics to the provision of healthcare. Progress has been slow and uneven. The evidence-based medicine movement has taken twenty years to gain a footing in day-today practice, and is still unevenly applied across health services. Some conceptual and philosophical issues are still largely ignored; for example, the nature of medical and related knowledge is rarely debated or researched, and aIthough attention was drawn to problems of arriving at consensus in the field (Brittain, 19851, little progress has been made to resolve outstanding and fundamental problems (Brittain, in press).

At the end of the 199Os, information technology-related issues figure strongly in a list of top-ten health trends likely to ride into the coming decade (Pavia, 1999). The American Medical Informatics Association sees three goals: “a virtual healthcare databank, a national healthcare


knowledge base, and a personal clinical health record” (Stead, 1999, p. 88). Further predictions made by Collen (1999, p. 4) include informatics continuing as a transforming force in healthcare. “Information technology will penetrate every aspect of professional practice, as very small, inexpensive computers pervade clinicians’ offices and examination rooms, nursing stations, procedure rooms, bedsides, clinics and patients’ homes.”

Mandl et al. (1998, p. 499) believe that “new communication technologies must never replace the crucial interpersonal contacts that are the very basis of the patient-physician relationship.” In health informatics’ brave new world-long awaited and not yet fully realized-the human element remains central.

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