information technologies for transforming · chapter 2 information technologies for transforming...

InformationTechnologies for

TransformingHealth

Care

he central event of successful health care is the preserva-tion of health or the healing of an infirmity through em-ployment of medical expertise for the benefit of a patient.This can be deeply satisfying for all parties, but it often

occurs within a complicated and frustrating health care deliverysystem. Working from dimly remembered medical facts and per-haps a few consumer health information brochures or a thinguidebook published by an insurance company, individuals mustdecide which doctor to select, pay for their care, negotiate reim-bursement, evaluate the care they receive, and choose healthylifestyles. But if patients and consumers have too little informa-tion, doctors and other health care practitioners generally havetoo much. They must keep abreast of a burgeoning medical re-search literature, gather information from bulging but inadequatepaper record systems, diagnose and treat diseases, educate pa-tients, and extend or limit patient access to specialists. Adminis-trators and insurance companies must work within informationsystems that are often poorly organized to answer complex ques-tions as they compete for customers, comply with shifting regula-tory policy, optimize use of resources, provide high-qualityhealth care, and meet investor demands for profitability. And thefederal government, in its role as a provider and purchaser ofhealth care, must find ways to minimize the cost of providinghealth care.

Many of the frustrations encountered by participants in thehealth care system can be traced to the inability of current in-formation systems to provide adequate, accurate, timely, and ap-propriate information. Poor information flow has become animpediment to efficient delivery of high-quality health care.

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30 | Bringing Health Care Online: The Role of Information Technologies

ISLANDS OF AUTOMATIONThere is a long history of attempts to solve theproblems of inadequate health information sys-tems by using computers. When the first general-purpose laboratory computer was introduced tothe market, it was immediately used in a projectto compile computer-based medical histories.40

Today, many hospitals spend a large portionof their budgets on computers and recordkeeping.An entire academic field called medical in-formatics has developed around the study of ad-ministrative, clinical, demographic, research, andeducational information generated in the processof delivering health care services. Many healthprofessionals believe that delivery and coordina-tion of care might be greatly improved if all rele-vant information were collected in a standarddigital form and broadly connected in a health datasystem. This would enable authorized persons torapidly access and modify data when necessary.

No such system currently exists.Thirty years of academic, commercial, and

government research have produced successfulpilot programs and commercial implementationsof parts of a comprehensive digital health in-formation system. Many hospitals have comput-erized their administrative or clinical records,many insurance claims and orders for supplies aresubmitted electronically, many research materialsare distributed over computer networks, and elec-tronic distribution of consumer health informa-tion has begun. However, there is still no systemthat comprehensively facilitates the flow of alltypes of health information and symmetrically ad-dresses the needs of clinicians, administrators,policymakers, patients, and consumers. The fullpotential of digital health information will only be

realized when it begins to flow beyond the con-fines of single departments, institutions, or com-munities.

The current situation is often characterized as aseries of islands of automation. This report pro-vides a tour of that digital archipelago; it surveysthe history and terrain of the existing islands of au-tomation and offers potential options for possiblefederal roles in enlarging and connecting the is-lands. This chapter begins, as it were, with theocean: it provides an overview of the organizationand flow of information within the broad healthcare system. It then describes information systemswithin hospitals and clinics. By focusing on thesubset of clinical information that has been storedconventionally as paper-based clinical patient re-cords, the discussion illustrates some of the prob-lems and challenges confronted in the effort todigitize health information. The chapter also de-scribes several key technologies that underlie ef-forts to build an interconnected health datasystem. Subsequent chapters describe ways thesetechnologies are being used in administrative sys-tems, clinical decision support and care evalua-tion systems, and systems for delivering healthcare to a scattered and diverse population throughtelemedicine and other techniques.

The story begins with a glimpse of the imag-ined mainland: the following scenario illustratessome of the many ways that health care might bedifferent should information technology achieveits full potential as a medical tool. The scenario isfictional, but not utopian: it explores how the ex-periences of consumers, clinical teams, adminis-trators, and policymakers might change in a worldwhere health information flows freely.41 It implic-itly illustrates some of the problematic aspects of

40 W.V. Slack et al., “A Computer-Based Medical History System,” New England Journal of Medicine, vol. 274, 1966, pp. 194-198. Slackused LINC, one of the first general purpose laboratory computers and an ancestor of the desktop computers now spreading throughout thehealth care delivery system.

41 In the scenario, information “flows freely” in that structural and technological impediments to exchanging information have been mini-mized, but it only flows within prescribed channels. This qualification will need to be applied to any comprehensive health data system thatmight develop. There must be adequate security and confidentiality mechanisms in place so that all participants are willing to trust the systemand put their information into it. In addition, the legal, regulatory, and technological standards that define the channels must be stable and ratio-nal enough for businesses and institutions to depend on them.

Chapter 2 Information Technologies for Transforming Health Care | 31

the digital revolution in health care, along with themany possible opportunities and advantages.Consider, then, a fictional scenario of health carein a fully digital world.

❚ Simplified AdministrationEmilia finished her reply to the clinic’s e-mailmessage and launched her web browser. Thee-mail had been a reminder confirming her ap-pointment later that day at the maternity clinic atthe medical school; with only a month remaininguntil her due date, she was well acquainted withthe routine of arriving at the clinic, having thenurse practitioner check the baby’s size and heart-beat, and returning home with a fresh stock of vi-tamins and increasingly real expectations for thefuture. Emilia chose the medical school’s homepage from her browser’s list of recently visitedsites and typed her name and password into thescheduling inquiry form. In a moment, the re-sponse to her query appeared: appointments in thematernity clinic were running about 20 minuteslate. She had plenty of time for lunch before thevisit.

For the past few years, Emilia had received pri-mary health care through the student health ser-vice at her college, but when she became pregnantall that changed. She was referred to the maternityclinic at a teaching hospital associated with theuniversity and had received all her prenatal visitsand screening there. From her first visit, it hadbeen apparent that things were done differently atthe hospital than at any doctor’s office or clinic shehad visited. Emilia and her husband John had ar-rived well before their scheduled appointment, ex-pecting to have to complete a pile of paper forms.Instead, they were directed to one of a set of kiosksin the reception area where they sat down and be-gan interacting with a computer program. Thecomputer asked Emilia to swipe the magnetic-stripe card from the student health service throughthe reader next to the machine, and then the ma-chine began asking them questions. Most of thequestions were the usual ones—“Do you have ahistory of heart trouble?” for example—but atleast she didn’t have to fill out all those tedious ad-

dresses—her own, her next of kin, and the like.The computer had already read them from themagnetic card. It took only five minutes to com-plete the program’s questions because it didn’t askfor the same information in many different wayslike paper forms often do. When she clicked on thebutton indicating that she was an only child, theprogram didn’t ask any further questions about thehealth history of her siblings. The program had afew sections for John to fill out about his own fam-ily history.

The kiosk then provided a curious sectionabout granting the hospital permission to use theinformation generated during her care. Emilia hadseen similar language in small type at the bottomof paper forms and had always initialed the boxesindicating her agreement, but she had never paidmuch attention to it. This program made the in-formation permission seem almost as important asthe health history itself: it requested specific per-mission to use all her medical information withinthe hospital, it asked for separate permission to re-lease her record of care anonymously to state orfederal authorities for research purposes, it askedfor permission to automatically compare her pro-file with those sought for various clinical trials inthe hospital, and on and on. In the end, the pro-gram summarized all the permissions she had giv-en and asked her once more to approve the wholeset. Emilia realized she didn’t fully understandwhat sorts of clinical trials the questionnairemight be referring to, and so she changed her ap-proval of that item to a request for more informa-tion.

After completing the program, she returned tothe desk and the receptionist gave her a new plas-tic card. “It’s a smart card,” he said, “try not tobend it.” Emilia asked why the program had beenso annoyingly thorough in asking for permissionto use her health information. “If we don’t annoyyou now, someone else might annoy you later,”the receptionist explained. “We keep digital re-cords instead of paper records in this hospital, sowe can’t control where our information goes justby locking the drawer of a filing cabinet. Ofcourse, we use passwords, encryption, and othersecurity measures to control who can read and al-


ter your records in the hospital, but some of yourhealth information goes elsewhere as well. We billyour insurance company electronically so all youever have to worry about is the copayment, and weabstract information from your records for reportsrequested by our management and those requiredby the government. The permission form you’vejust completed provides another layer of securitythat helps ensure that whenever your records areused for purposes other than directly providingcare to you, you know about it and have approvedit. It’s a little like giving us a digital power of attor-ney—anyone who has your health informationand wants to release it to someone else for a differ-ent purpose has to check for your permissionagainst the file you’ve just created. That’s the rule,even if everything directly identifying you hasbeen removed from the record. You’re not givingus blanket permission to use your health data—that’s why the form is broken into so many separatequestions covering different aspects of informa-tion sharing. And it’s fine to decline permission onthis form—that just means we’ll need to ask yourpermission on a case-by-case basis later.”

Emilia thought for a moment. “So I own myhealth records?” The receptionist smiled, “No,and you certainly couldn’t reassemble all the in-formation once it is released, but you can help de-termine where that information goes. I see thatyou’ve asked for more information about enroll-ment in clinical trials. The computer has put a re-minder on your nurse practitioner’s schedule todiscuss that with you. She’ll tell you about someof our ongoing research and discuss how your caremight be affected by your decision to share orwithhold information from the system thatmatches eligible patients with clinical trials.”

❚ Informed Patients and ConsumersEmilia and John had many more experiences withthe kiosk following that initial visit. Each timethey came to the clinic, they checked in by insert-ing the smart card and charging the copayment totheir credit card, then used their spare momentsbefore the nurse practitioner was available to learn

more about their baby. The computer referred toinformation in Emilia’s electronic patient recordand then presented multimedia modules tied to thegestational age of the baby. When ultrasoundscans were taken early in the pregnancy, theycould review them on the screen in full motion,and Emilia was able to change the contrast andcolor schemes so that even John could recognizethe baby’s face. They still got the little snapshotthat most parents take home, but they could alsoe-mail their parents a minute or so of digitized vid-eo as well.

There were modules about the risks and bene-fits of alpha-fetal protein screening, genetic test-ing, pain medication during delivery, and themany other decisions they had to make. WhenJohn couldn’t go with her to the prenatal visits, hewould work through the same educational mod-ules at home using a web browser over the Inter-net. Emilia liked being able to find the answers tosome of her questions without having to ask theclinician directly—not only did she avoid havingto play telephone tag with the clinic or call in atcertain hours of the day, but she could get informa-tion on her own so that she was more confident inasking questions face-to-face.

Emilia collected information from several dif-ferent electronic information sources besides themedical school. She borrowed a health informa-tion CD-ROM from a friend and found severalmore disks and videos at the city library. She sub-scribed to a free Internet mailing list about preg-nancy and childbirth experiences and participatedin a chat forum with other women on a commer-cial online service. And she made a point of regu-larly exchanging e-mail with some of the otherwomen in her birthing classes at the hospital. Thatclass was definitely not a place for high-tech mul-timedia programs, but for hand-holding andeducation from a nurse who had seen many, manybirths. Nonetheless, the scheduling for the classwas set up through the hospital computer system,and the women kept in touch electronically witheach other and their teacher between classes.


❚ Paperless MedicineWhen Emilia arrived at the clinic, she answered afew questions that the kiosk had for her and thenwent into a room where a nurse recorded herweight and vital signs and measured her belly be-fore the nurse practitioner arrived. The nurse in-serted Emilia’s smart card into a computer in theexamination room and typed the weight and sizemeasurements into a form that appeared on thescreen; the blood pressure machine and thermom-eter were hooked directly into the computer sys-tem and their measurements appeared on the sameform automatically. Computers in the teachinghospital certainly weren’t limited to multimediakiosks in the reception area. Every doctor, nurse,receptionist, and treatment room had one, and allthe computers were interconnected by cables, ra-dio, or infrared links. When the nurse practitionerentered the room, she was invariably holding asmall computer in her hand and noting the new da-tapoint on the graph showing Emilia’s weightthroughout her pregnancy. A summary of Emilia’sprevious visits and her responses to the screeningquestions today were also provided. The nursepractitioner’s computer didn’t have a keyboard,but that didn’t seem to matter because there waslittle writing or typing involved. If the NP wantedto order a laboratory test, for instance, she selectedthe proper form from a menu on the screen andmost of the information would already be filled inby the computer. She used a stylus to check offboxes indicating what she wanted done and thendispatched the order by tapping out her passwordon a little keyboard displayed on the screen. Dur-ing most of the encounter, the NP simply set thecomputer aside and concentrated on the patient.Today, she had a concerned look on her face.

“Emilia, I’m worried that your baby’s sizeseems to be reaching a plateau rather than sharplyincreasing in the usual way for the last few weeksof pregnancy.” She showed her the screen of herhandheld computer, which had a plot of the se-quence of Emilia’s measurements along with anormative size development chart. “The dashedlines represent the limits for a standard distribu-tion of women. You’re still within those bound-

aries, and so your baby may well be developingnormally, but I’d like to order a few tests, begin-ning with another ultrasound. I can see that the ul-trasound technician has an opening at 2:20, andI’d like you to get the test done as soon as pos-sible.”

Emilia’s heart fell. It would be her third ultra-sound so far. The first one had been exhilarating,and the second one less so. It had produced the ex-pected pictures, but hadn’t really been mentionedby her doctor after it was completed. It seemedthat the clinicians were willing to order tests veryreadily, given that there wasn’t any paperwork in-volved and the results appeared very quickly ontheir screens. How did they know that ordering somany tests helped ensure healthier deliveries? Itcertainly wasn’t cheap. At this point, though, shewasn’t worried that the ultrasound was unneces-sary but that it would be a harbinger of bad news.As she refocused her thoughts, she could hear thenurse practitioner saying, “You have an hour. Whydon’t you spend the time looking at our Deliveryand Birth CD-ROM just in case you don’t havethe opportunity to finish those classes?”

❚ Empowered Clinical TeamsIn the staff conference room, Dr. Conway’s pagervibrated and the digital assistant on the table infront of her simultaneously awoke from its elec-tronic slumber. The doctor felt a little sleepy her-self, but at least she was getting continuingmedical education credits for these lunchtimeseminars utilizing the satellite link to Boston. Sheglanced at the incoming e-mail, which indicatedthat an obstetrics resident wanted her help with adecision about a potential c-section. The doctorleft the seminar quietly and read the case précisthat the digital assistant displayed as she walkeddown the hall.

Emilia’s ultrasound technician had used imag-ing software to measure pockets of amniotic fluidaround the baby and had recognized that the vol-ume of the pockets was critically low for this stageof pregnancy. One of the hospital’s decision sup-port systems had come to the same conclusion bycomparing the numbers in the technician’s sum-


mary to the predictions of the OB-GYN expertsystem. After asking the technician to confirm itsfinding, the computer issued an alert to the resi-dent on call. The resident’s online work history in-dicated that he hadn’t had direct experience withthis type of case, so the system prepared a one-page summary of similar cases from the last yearand a set of hyperlinks to the abstracts of relevantresearch literature. The resident skimmed the in-formation as it appeared on his clipboard-shapedcomputer, talked to Emilia, and came to a quickdecision to admit her to the hospital. With thetouch of several on-screen buttons, he dispatchedsoftware agents that silently scheduled a room forEmilia, requisitioned a suite of monitoring equip-ment, ordered IV bags and Pitocin from the phar-macy, altered nursing assignments, and summonedDr. Conway.

Emilia had entered the clinic that morningthinking it would be a normal day, but now shefound herself in the labor and delivery room with-out so much as a suitcase. . . the baby needed tocome out, labor would be induced, and the onlyquestion was whether a c-section could beavoided. She longed for the sort of uncomplicatedbirth described in her classes, but it was not to be.As she was calling John on her bedside phone andasking him to drive faster, a nurse wheeled in sev-eral monitors and an IV pump and quickly at-tached them to a bedside computer. The nurseopened a panel on the IV pump and inserted a bar-coded bottle; �� began glowingon the computer screen. Now the monitorshummed all around Emilia, measuring her pulseand blood oxygenation and the baby’s as well, andready to measure the contractions that wouldcome. Emilia was attached to so many wires thatshe felt her body itself was a part of the informa-tion superhighway. She felt disoriented, but at leastthe nurse had sufficient time to sit with her for afew minutes and explain what was happening.

Dr. Conway walked in with the resident andintroduced herself. “We’ve been watching the fe-tal monitor data as we discussed your case in thenext room—there’s no indication that the baby isin distress, so we’re going to induce labor as soonas your husband arrives and see how it goes.

Please try to relax—chances are you’ll be homewith your baby in 24 hours. Do you have any aller-gies to medications I should know about?” Emiliaalmost replied that there wasn’t anything particu-larly relaxing about being sent home less than 24hours after delivery, but she sighed and simplysaid, “No, no allergies.” Dr. Conway already knewthat—the pharmacy alert system had cross-checked Emilia’s history for potential problemswith the pain-management drugs that might beused in the delivery and posted the results alongwith the drug prices on her digital assistant—butshe always asked again, just to be sure. She chosethe medications she wanted from the displayedformulary and dispatched a software agent thatwould arrange for delivery of the drugs to Emilia’sbedside and update the pharmacy’s inventory andreordering system. She performed a quick physi-cal exam and then sat at a console in the corner todictate her findings into Emilia’s patient record.As Dr. Conway spoke into the microphone, thecomputer recognized her words and inserted theminto forms on the screen in front of her much fasterthan she could have typed them. She filled out thecare plan and entered nursing and laboratory or-ders with a few touches of a stylus on the screen ofher digital assistant. Finally, she used a passwordto attach a digital signature and time stamp to theorders and the findings and then turned in herchair. “Emilia, when your husband arrives, youshould start discussing names for the baby. That’sone decision our computers can’t help you make!”

THE LIFE CYCLE OF HEALTHINFORMATIONEmilia’s story describes some of the ways that ap-plications of information technologies couldchange the delivery of health care. The scenariofocuses on the experiences of a patient in a special-ized clinical setting at an urban hospital. However,similar opportunities, difficulties, and changeswill arise as information technologies are incorpo-rated into the jobs of health care workers and intohome health care, rural health care, medicaleducation, population-based public health ser-vices, and other types of health care delivery. The


first step in this process is the digitization of healthinformation and the creation of an infrastructurethat allows health information to flow seamlesslyamong the various parts of the delivery system.

Although the experiences described in Emilia’sstory depend on the use of information from manydifferent sources and on communication betweennetworks administered by many different types ofinstitutions, they are sometimes said to be prod-ucts of an electronic, digital, or computer-basedpatient record. This report will use the term com-puter-based patient record in a more limitedsense: it is a compilation in digital form of all theclinical and administrative information relating tothe care of a single individual. Computer-basedpatient records serve as repositories for clinical in-formation and as records of communications andtransactions; their analogs in traditional health in-formation systems are paper-based patient recordsor charts, usually kept in folders along with filmsat each site of care. Although computer-based pa-tient records may be localized in a single data file,they might also be widely distributed in comput-ers throughout an institution or among severalinstitutions. In either case, the perceived locationof the record is on a computer screen in front of theperson using it at any particular moment.

It is possible to design stand-alone computer-based patient record systems and some are in use,but much of the advantage of computerizinghealth information is lost if other systems andprocesses within the provider institution are un-able to interact with information in the record.Maintaining a stand-alone patient record, for ex-ample, could require caregivers or clerical person-nel to retype test results that were produced by acomputerized lab analyzer in order to get theminto the record, or to retype administrative in-formation from the record for use in creating fi-nancial statements. To avoid these inefficiencies,computer-based patient records are usually em-bedded in various other information systems.

These systems include not only computer hard-ware and software and networks, but also the“people, data, rules, procedures, processing andstorage devices—and communication and sup-port facilities” involved in managing the recordsystem and distributing data and informationthroughout the provider organization.42 For hos-pital patients, computer-based patient records aretypically linked to clinical information systemsthat track clinician-patient encounters, and theymay be linked to administrative, laboratory, nurs-ing, and pharmacy information systems as well.However, most health care encounters occur out-side of hospitals. The large amount of health in-formation generated in primary care and homecare settings could be captured in computerizedpatient record systems embedded in informationsystems appropriate for private and group practicedoctors and public health workers.

Ideally, within a single institution, the distinc-tions between these various information systemsshould be transparent to users so they becomeparts of a seamless enterprise information system.In practice, however, the components for eachtype of information system are usually procuredseparately, and their integration can be plagued bya lack of design coordination and technical stan-dards. New departmental computer systems maybe incompatible with each other and with pre-viously installed legacy systems. Although thediscussion in this chapter primarily encompassesclinical information systems in hospitals, most ofthe benefits described in the scenario will comefrom the synergistic interaction between comput-er-based patient records and broader sources of in-formation assembled from a variety of networkedinformation systems. The next section illustrateshow information flows within clinical informa-tion systems and discusses the content, utility,strengths, and weaknesses of paper and computer-based patient records.

42 Richard S. Dick and Elaine B. Steen (eds.), The Computer-Based Patient Record: An Essential Technology for Health Care (Washington,

DC: National Academy Press, 1991), p. 12.


❚ Clinical Information SystemsFigure 2-1 shows some of the ways that informa-tion flows between patient records and the variousinformation systems inside and surrounding alarge health care organization.43 The informationmight be contained in a mixture of paper and com-puterized records and transferred via computernetworks, fax, modem, mail, or courier. The fig-ure indicates general sources and destinations ofinformation, but is not intended to reflect the spe-cific architectures or communication pathways ina particular setting. For instance, the institution’sdata repositories are shown near the center of thefigure, but they may be implemented as a singlecentralized record system or distributed amongvarious departments in the hospital. The data re-positories include administrative and clinical pa-tient records representing information aboutindividual patients. They also include financialand other management-oriented databases that in-corporate data gleaned from records of the entirepatient population. Information such as sched-ules, personnel records, internal communications,and regulatory policies that support the operationof the institution are also included. One of the keyadvantages of shifting to computer-based patientrecords is the opportunity to strengthen the linkbetween clinical records and management in-formation systems so that resource use and qualityof care can be analyzed using clinical data.

Clinical patient records contain encounterinformation, bedside data and nursing notes gen-erated in the wards, laboratory reports, pharma-ceutical receipts, images, and specialized reportsfrom various institutional departments. The ad-ministrative departments exchange informationwith various external health care providers andpractitioners and with the patient. They also gen-

erate information about the patient’s demograph-ics and movements within the hospital andcompile bills using information from the clinicalrecords. The bills and orders for new supplies arepassed to logistics departments, which generatepurchase orders for medical supplies and pharma-ceuticals. They also send out bills to insurancecompanies and request (through intermediaries)reimbursement from the Health Care FinancingAdministration (HCFA) and state agencies forcare provided through the Medicare and Medicaidprograms. Caregivers may use clinical researchliterature, public knowledge bases, and other ex-ternal information resources. Federal and stategovernments indirectly shape the flow of healthcare information by funding clinical research andaspects of communication infrastructure develop-ment, and through the regulatory activities of theFood and Drug Administration, HCFA, state li-censing authorities, and other bodies.

One example of a comprehensive clinical in-formation system is the Regenstrief Medical Re-cord System developed by the Indiana UniversityMedical Center.44 This system is used for bothhospital and outpatient care in a network of threehospitals and 30 clinics, several health mainte-nance organization (HMO) offices, and care sitesfor the homeless and elderly. The system capturesdata from clinicians through an order-entry sys-tem and through links to administrative, laborato-ry, and pharmacy information systems. Inaddition, it captures nursing notes and some of thedata generated by bedside monitors and electro-cardiogram carts. It automatically reviews eachpatient chart for completeness and uses a set ofmore than a thousand rules to generate noticesabout allergies, potential drug-diagnosis interac-tions, treatment suggestions, preventive care, and

43 The figure gives a central role to the hospital as a reflection of this chapter’s emphasis on information systems in hospitals. Of course, mostindividuals receive very little of their care at hospitals, and while hospitals generate an enormous amount of medical and administrative in-formation, they are only one part of the overall health information complex. Chapters 1, 3, and 5 address this larger context and discuss primaryhealth care, integrated health maintenance organizations, consumer health information, and other generators and users of health information.

44 C.J. McDonald et al., “The Regenstrief Medical Record System—Experience with MD Order Entry and Community-Wide Extensions,”

Proceedings of the Eighteenth Annual Symposium on Computer Applications in Medical Care, vol. 18, 1994, p. 1059.


FIGURE 2-1: Health Information Pathways to Hospital Information Systems

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compliance with institutional guidelines. En-sembles of patient records meeting specific crite-ria can be assembled by scanning a databasedescribing more than 800,000 patients and 80 mil-lion separate clinical observations. Administra-tors use this capability for quality-controlpurposes and medical researchers use it to as-semble cohorts of eligible patients for clinicaltrials. The Regenstrief system is a hybrid of paper-based and computer-based information manage-ment: some information is captured anddisseminated electronically, but the system alsoprints reports of rounds made by physicians and aset of reminders, alerts, and customized encounterforms on paper prior to each patient’s visit. Clerkstranscribe and code the handwritten notes on theseforms after the encounter.45

Some of the institutional capabilities describedin this section are also available for individual orgroup medical practices through software thatadds the capability for clinical recordkeeping toadministrative practice management systems.

❚ Paper-Based Patient RecordsMost of the clinical and administrative informa-tion that flows throughout the health care systemis still recorded on paper. Over 10 billion pages ofpatient records are produced in the United Stateseach year,46 each of them a masterpiece of idio-syncratic functionality. In order to receive accredi-tation, hospitals must ensure that their recordsmeet certain minimum content standards estab-lished by the Joint Commission on Accreditationof Healthcare Organizations, as well as any con-tent requirements mandated by state regula-tions.47 In general, however, health careorganizations are free to determine how the in-formation is arranged. Institutions design theirown filing and communications systems to meet

internally determined information needs, and in-dividual departments often design forms to reflectinformation generated in self-contained proc-esses. To some extent, paper records are individu-alistic even to the level of single sentencesbecause much of the information is handwrittenand clinicians may phrase entries using their ownterms and conventions.

Box 2-1 lists some of the many types of in-formation that usually appear in a hospital’s paperrecords. Different types of providers might as-semble records with different content; for exam-ple, ambulatory care records generally have fewercategories of information than hospital records,but they may span a much greater time period be-cause they are historical records documentingmany encounters. Patient records also incorporateadministrative records such as letters, insuranceclaims, and bills, although these may be storedseparately from clinical records.

Paper records within a single folder have tradi-tionally been kept either in the chronologicalorder of collection or in source-oriented or pro-blem-oriented formats. Source-oriented recordsare organized with forms from nurses, physicians,labs, and other sources in separate sections. Prob-lem-oriented records organize the various notesinto a brief database of information identifying thepatient, a problem list of the aspects of the pa-tient’s condition that require treatment, an initialplan for treating the problems, and progress notesdetailing actions engendered by the problems andplans.

This nonstandardization of patient records isnot necessarily a symptom of poor design;instead, it is a reflection of the main task that pa-tient records once served. They were a highly de-tailed, patient-centered documentation of the careprocess and a record of everything that happened

45 C.J. McDonald and G.O. Barnett, “Medical Record Systems,” Medical Informatics: Computer Applications in Health Care, E.H. Short-

liffe and L.E. Perrealt (eds.), G. Wiederhold and L.M. Fagan (assoc. eds.) (Reading, MA: Addison-Wesley, 1990).

46 U.S. Congress, General Accounting Office, Automated Medical Records: Leadership Needed To Expedite Standards Development

(Washington, DC: General Accounting Office, 1993).

47 Some examples of state legal requirements for medical records are discussed in ch. 3.


BOX 2-1: The Content of Patient Records

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with respect to a patient during a particular epi-sode of care. In ambulatory care settings, theywere also repositories of historical informationabout an individual’s previous care. The recordsmediated communications and conveyed instruc-tions and responsibilities among members of themedical team. In this context, designing a stan-dard format for documenting patient-clinician en-counters made about as much sense as trying toenforce a standard format for phone conversationsor diary entries.

The problem is that the functionality requiredof patient records has grown far beyond thebounds of recordkeeping and communicationwithin a limited team because of changes to boththe delivery system and clinical practice. Patientrecords are now widely used for legal, administra-tive, and research purposes. They have becomesources of information for determining eligibilityfor insurance payments and for documenting theextent of injuries or the quality of care for use inlegal proceedings. They may be used to provide


data for evaluating the quality and appropriate-ness of care for peer review, accreditation, or otherquality assurance programs and for reportingcommunicable diseases and other required data tocivil authorities. With the advent of integratedmanaged care organizations, clinical records havebecome information sources for analyzing the re-source requirements, outcomes, and profitabilityof health care practices.

In response to these broader functions, patientrecords now have at least two phases. In the activephase, clinicians and administrators insert andedit information. As legal documents, patient re-cords are treated like other business records thatmight be needed in a trial. Recorded entries mustbe made by people with first-hand knowledge ofthe events, acting in their ordinary capacity, andthe time and date of each entry must be shown.When errors are found and corrected, the recordmust show clearly both the original entry and thecorrection, along with the name of the personmaking the correction. In the passive, permanentphase the patient record serves as an unalterablelegal record.48 Its contents are occasionally ex-amined, usually by users far removed from theclinical setting. At this point, information may beabstracted from the record for research or manage-ment purposes, and all links identifying the in-formation with a particular individual removed.

Even with this adaptation, paper records maynot be adequate for the information demandsof modern health care delivery systems. A num-ber of weaknesses of paper records have beenidentified:49

� Paper-based patient records document thecaregiving process inadequately. Medical re-cordkeeping is a hurried, ancillary activity inthe encounter room. Clinicians may not haveenough time to completely and accurately fillout the forms comprising the paper records, and

the required health information is sometimesunavailable or of questionable accuracy as thenotes are written. Physicians’ and nurses’ notesmay be illegible if handwritten, or inaccurate ifdictated and then transcribed. Detailed descrip-tions of the patient’s health problem and thereasoning behind diagnoses and choices of ser-vices may be left out or abbreviated becausethey are hard to summarize and tedious to re-cord. The voluminous data from physiologicalmonitors are difficult to record accurately byhand. Other components, such as laboratoryand radiological reports, may be missing be-cause of filing or communication errors.

� Paper-based patient records hinder informa-tion flow. Once information has been recordedwithin a set of bulky paper records, it may notbe readily accessible later. Efforts to compile amore complete paper record are likely to exac-erbate this problem. The data are bound to thepaper itself and individual pieces cannot besorted for relevance, making the record diffi-cult to use when dealing with multiple prob-lems or extended treatments. Collecting andaggregating data from multiple records for pur-poses of quality monitoring or clinical researchinvolves an expensive and time-consumingmanual search. Paper records can be in only oneplace at a time. Short of laboriously photocopy-ing and then shipping them by courier, recordsmay frequently be unavailable to a caregiverwho needs them. When the record is unavail-able, new data cannot be entered in a timelymanner; entries must often be made frommemory or copied from other forms or informalnotes. This can lead to the creation of “shadowrecords” that are difficult to coordinate with theprimary record set and which may contain con-flicting or anachronistic data. Finally, the data

48 J.P. Tomes, Compliance Guide to Electronic Health Records (New York, NY: Faulkner and Gray, 1994), pp. 9-11.49 Dick and Steen, op. cit., footnote 3; and M.L. McHugh, “Nurses’ Needs for Computer-Based Patient Records,” in M.J. Ball and M.F.

Collen, Aspects of the Computer-Based Patient Record (New York, NY: Springer-Verlag, 1992), pp. 16-29.


are only as secure as the paper itself, and entirerecords, or individual pages within a record,can easily be misplaced, damaged, lost, orstolen.

� Paper records impede the integration of healthcare delivery, research, and administration.The wide variety of formats, styles, and orga-nizational systems for paper records frustratesthe coordination of care between differentproviders, or even between departments orpractitioners in the same institution. The im-penetrability of the record means that there arefew tools that can use information in the paperrecords to generate reminders, decision aids,and other supports for work.

❚ Computer-Based Patient RecordsIf all the information in paper-based records weredigitized and embedded within information sys-tems that provide rapid, contextualized access tothe data and links to other information in the insti-tution, some of the shortcomings of paper record-keeping could be addressed:

� The health care delivery process could be fullydocumented. Information could be gathered asit is generated using a variety of conventionaland handheld computers equipped with key-boards, pen-based structured data entry, andvoice or handwriting recognition. Illegible orinconsistent entries could be caught and cor-rected as they are entered. Physiological moni-tors could collect data and insert themautomatically into the record after checking forerrors, noise, and inappropriate values. Con-flicting data from disparate sources could bereconciled and cross-checked for accuracy.Medical orders, their results, and all other inter-nal transactions could be tracked automatically.

� Health information could be unfettered. Itcould be stored as individually indexed itemsof information that could be abstracted into re-ports and compared among patients. Recordscould be accessed simultaneously by multipleusers and easily duplicated when necessary. In-formation anywhere in the record could be ac-cessed with minimal delay. Data could be

liberated from any one delivery medium anddigital devices that access them could be de-signed with a wide variety of capabilities andcapacities.

� Caregiving, research, and administrationcould be knit together. Data from digital re-cords could be extracted and exchanged ac-cording to consensus standards. Their contentcould be enriched through the development ofdecision support tools. Patient records could beshared within and across institutions, thusavoiding delays.

Not all approaches to collecting health in-formation meet these objectives equally well.Most of the benefits of computerizing the patientrecord are realized when information is deliveredto the caregiver or patient, but most of the expenseand problems of computerizing the patient recordare realized when the information is collected. Ingeneral, converting raw data into electronic in-formation that can be shared requires that caregiv-ers spend extra time and lose some flexibility intheir recordkeeping—at least initially—and it re-quires institutional investments for training,maintenance of standards, and redesigning workprocesses. The costs and benefits of electronic pa-tient records are proportional to the effort in-volved in collecting, organizing, and distillingdata into useful information.

For example, a page from a paper patient recordcould be stored electronically in many differentways. The information could be simply scannedand stored as an image (much like a fax) that is apicture of the paper form, but is not searchable oreditable. Document imaging systems are widelyavailable that use computers and optical disks tostore such images and make them available to cli-nicians on workstations with graphics terminals.These systems reduce the amount of physical stor-age space required for patient records, and they al-low the records to be shared by clinicians andadministrative offices without physically trans-porting the records. Preparing to implement animage-based system can help institutions stream-line their recordkeeping system by forcing them toanalyze the paper forms in use and eliminate re-


dundant ones.50 Some systems allow clinicians touse electronic signatures to approve documentimages at the workstations, and others allow in-formation from laboratory instruments or othercomputerized processes to be captured as textalong with the images. While document imagingsystems can mitigate some of the problems of thepatient record, they are not really a step toward de-veloping a true computer-based patient record orprovider information system. They have the dis-tinct disadvantage of being primarily a collectionof images rather than a collection of separately ad-dressable facts about each patient, and the in-formation in those images cannot be easilyextracted or manipulated for reporting purposes orfor integration with decision support systems. Pa-tient records from document imaging systemscannot be easily shared with other departments orinstitutions using different record systems.

Additional effort can be expended as the dataare collected and stored to make the health in-formation in the records more useful. Documentimages can be converted to textual form either byapplying secondary processing techniques such asoptical character recognition or by manually re-typing the data using word-processing software.Paper documents and document images can besidestepped entirely by entering the data directlyinto computers through on-screen forms. Once in-formation is stored as text rather than images oftext, it becomes much more mobile because it canbe exchanged electronically as files or e-mail withother information systems. Free-text data is stillproblematic, however, because it is unstruc-tured—there is no set placement or format for theinformation it contains—and because the termsused in the text may have ambiguous or inconsis-tent definitions. These problems can be addressedby using databases that store data as discrete ele-ments that are separately addressable and edit-able—rather than as long, unstructured textfiles—and by the adoption of various standards toconsistently define the structure and content of

electronic messages between information sys-tems. Although the existence of various standardsmay be transparent to the clinician, the use of suchstandards is often facilitated through the use ofstructured data entry, where the organization ofdocumentation and the choices of terminology arepredefined and standardized.

Implementation of an information system withdatabases, structured data entry, and messagestandardization requires more sweeping changesin documentation practices than adoption of animage-based system, but the resulting patient re-cords are far more flexible and harness more of thecomputer’s power as an analytical tool. Becauseeach fact about the patient is stored discretely andcan be retrieved separately, information can be or-ganized and presented in different ways, depend-ing on the needs of the user. The records can easilyincorporate information from laboratory and ad-ministrative systems and the information systemsof outside providers, and they can be supplement-ed by decision support systems. On the otherhand, collecting such information in usable formfrom all the different sources can present a pletho-ra of organizational and technical hurdles. Be-cause of the costs involved, in terms of investmentin hardware and software, professional effort, andchanges in work process, organizations take thesehurdles a few at a time. Today, few, if any, providerorganizations have a completely electronic patientrecord. Most providers who are working towarddeveloping computer-stored records find them-selves somewhere along an evolutionary continu-um, using a hybrid system encompassing bothcomputer and paper records.

KEY TECHNOLOGIES FOR THEEMERGING HEALTH INFORMATIONINFRASTRUCTUREEmilia’s scenario at the beginning of this chapteris fictional; it portrays a suite of information toolsand resources harmoniously communicating with

50 “Case Study: The Toledo Hospital Turns to Document Imaging To Automate Emergency Center Medical Records,” Healthcare Telecom

Report, Sept. 26, 1994, vol. 2, No. 20, pp. 1, 5-7.


each other and integrated into health care deliveryin a way that is not available anywhere today.However, while the synergy between the tools isfictional, the tools themselves are readily avail-able. Information technologies have been used formany years in academic, governmental, and pri-vate research, in pilot projects, and in commercialproducts, and consensus is emerging on whichones will form the basis for an advanced health in-formation infrastructure. This section introducesseveral important communications and computertechnologies, including computerized data cap-ture and distillation, high-capacity digital storage,broadband telecommunications, and advancedhuman-computer interface techniques.

There are several reasons why the technologiesand standards underlying applications must be un-derstood for purposes of setting public policy.First, technological changes are challenging therelevance and enforceability of the existing bodyof state and federal law. Several states virtuallypreclude the development of computer-based pa-tient records by specifying in pen and quill legis-lation the required storage media for patientrecords.51 These laws were no doubt meant to en-sure the singularity and permanence of patient re-cords, but they were probably written without anappreciation of the compactness, duplicability,and durability of optical disks. While it is true thatoptical disks have only become available relative-ly recently, their features have been described andexpected for at least 20 years. To avoid inflexibleand inappropriate laws, it is important to considertechnological trends well in advance of their im-plementation.52

Second, technologies have inherent affor-dances53—they make some activities very easyand others more difficult, and they imposeconstraints on the behavior of users. For example,Canada has a telecommunications infrastructurethat ensures cheap, reliable data transfer usingmodems, and France has an infrastructure thatsupports the widespread use of smart cards, whichcan hold several pages of data and be carried in awallet. One result of the different affordances ofthese two technologies is that the experience ofprocuring health care and transferring patient re-cords in Canada is very different from that inFrance. In Canada, smart cards are being used totransfer data in small, special purpose situations,but the bulk of the flow of health information oc-curs over integrated data networks.54 In France,the extensive smart card infrastructure and theability of individuals to choose their own doctors,health care establishments, and pharmacies havegiven rise to over 70 different card systems. Basichealth information and the specific details relatedto a single treatment or prescription are encodedon a card and later accessed by the appropriatehealth care provider, government services agency,or pharmacy. The cards make patient records moreaccurate and mobile than paper records, but theydo not to contain a person’s entire health history.55

Legislative action that encourages specific tech-nological approaches, such as broadband commu-nications, inevitably affords some conveniences,some problems, and many striking changes inhow health care can be delivered. It is importantthat such consequences be anticipated before leg-islation is crafted.

51 The laws, which usually specify paper or microfilm records, are explained more fully in chapter 3.52 This caveat applies to legislation that might endorse any particular storage medium or other specific technology, including optical media.

For instance, the equipment to read optical disks is often obsolescent long before the disks themselves.

53 D.A. Norman, Things That Make Us Smart: Defending Human Attributes in the Age of the Machine (Reading, MA: Addison-Wesley,

1993), p. 106.

54 R. Alvarez, “Canadian Policies and Strategies for Health Cards,” unpublished paper presented at Cartes Santes conference, Marseilles,

France, September 1993.

55 Phoenix Planning and Evaluation, Ltd., “Potential Card Applications in the Health Care Industry,” unpublished contractor report pre-

pared for the Office of Technology Assessment, U.S. Congress, Washington, DC, January 1994.


Finally, despite the evanescent nature of high-technology products in an entrepreneurial society,successful technologies and standards have endur-ing influence. Each new generation of informationtechnologies forms a legacy that future genera-tions must support. At the cusp of what may be amajor expansion in the purchase of computers andtelecommunications equipment for health carepurposes, it is important that technologicalchoices embodied in legislative policy and gov-ernment procurements be consistent with long-range congressional goals for public health,medical research, and personal privacy. Thetechnologies described in the following sectionsare shown in table 2-1.

❚ Capturing Data at the Point of CareClinical records document brief encounters be-tween health care professionals and the patientthrough descriptive text, diagnoses, treatmentprotocols, and nurses’ notes typed or written byhand on charts and forms. Measurements of physi-ological variables are a second major source ofclinical data. Nurses, respiratory therapists, andother practitioners read these measurements frommedical monitors periodically and transfer themto the patient record. Although clinicians and oth-er end-users of patient records are most likely tobe held legally responsible for their quality, re-sponsibility for entering the data is often eitherdelegated to a transcriptionist or delayed until theend of the shift. Whenever the responsibility forinserting these types of data into the record is dele-gated or postponed, the possibility of incorporat-ing errors is increased.

Several new technologies may address thisproblem by capturing clinical data as they are gen-erated at the site of care. This generally improvesdata quality because that quality is best verified bythose who rely on it most frequently.56 These data

TABLE 2-1: Key Information Technologies for Health Care

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56 S. Henderson et al., “Computerized Clinical Protocols in an Intensive Care Unit: How Well Are They Followed?” Proceedings of the

Fourteenth Annual Symposium on Computer Applications in Medical Care, vol. 14, 1990, pp. 284-288.


collection technologies include portable comput-ers, digital assistants, speech and handwriting rec-ognition, and the standardization of automateddata collection from medical monitors.

Portable computers may be either small ver-sions of desktop computers or they may incorpo-rate entirely new hardware, operating systems,and data organization paradigms. Laptop comput-ers are not widely used in hospital rooms becausethere is rarely a flat spot on which to rest them.Instead, tablet computers that can be operatedwhile being cradled in one arm are used. They usu-ally contain small hard drives, backlit screens, andbatteries that last a few hours before recharging.They may contain small PC cards (also known asPCMCIA cards) that allow them to communicatevia wireless modem or with short-range radio orinfrared receivers attached to the computer net-work in the hospital.57 They resemble laptop com-puters in size and weight, but their keyboards areeither missing entirely or folded behind the dis-play screen. The screen itself is a digitizer as wellas a display, which means that it can detect thepresence and position of a nearby stylus. The sty-lus is used like a mouse on a desktop computer topull down menus, activate icons, and press “but-tons.” Numbers and letters can be entered with thestylus via an image of a conventional keyboard,but medical applications for tablet computers typ-ically avoid ersatz typing as much as possible.Instead, the user chooses from a branching set ofpossible actions. For instance, to write a prescrip-tion, the doctor might use the stylus to pull down amenu to initiate the process and then choose “anti-biotic” from a short list of drug types that appears.A list of antibiotics in the hospital’s formulary ap-pears, and when one is chosen a list of appropriatedosages appears, and so on. However, if this proc-ess is poorly designed, the clinician is trapped in asingle mode of communication—prescriptionwriting—until entirely finished. It may be diffi-

��

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cult to navigate through the series of lists and toback up and correct errors.

Personal digital assistants (PDAs) are a differ-ent type of portable computer. As shown in thephoto, they fit in the pocket of a medical lab coat.They have smaller displays than laptop comput-ers, and their batteries last much longer. PDAsmay have wireless communications capabilities,and while they lack hard drives, they typicallyemploy high-performance computer processors.The extra processing power allows them to ad-dress some of the shortcomings of mobilecomputing without keyboards by using human-computer interface designs not found on desktopcomputers. One approach is to use a social inter-

57 PC cards are not limited to communications devices; they can contain more exotic equipment such as miniature hard drives, encryption

chips, or even atomic clocks.


face such as that presented by devices employingGeneral Magic’s Magic Cap operating system.Different capabilities of the computer are repre-sented by different physical objects in a room por-trayed on the display. To write prescriptions, theclinician might tap on a picture of a notepad; shecould also tap on a medical reference book to lookup a drug’s description even as she works on theprescription.

Other PDAs use handwriting recognition ornovel data storage strategies, such as those facili-tated by Apple Computer’s Newton operating sys-tem. A wide variety of clinical applications havebeen written for Newton PDAs, including chart-ing and patient management software, medicalreference texts, applications for accessing drug in-formation and writing prescriptions, and calcula-tors for determining drug dosages, IV drip rates,and other common medical computations. Oneexample is the Constellation Project at Brighamand Women’s Hospital and Massachusetts Gener-al Hospital in Boston that equipped medical resi-dents with PDAs containing the AmericanCollege of Physicians’ Medical Knowledge Self-Assessment Program, an ICU/CCU Drug Refer-ence Book, the hospitals’ Medical ResidentHandbooks, a medical calculator, and several oth-er medical reference texts.58

Handwriting recognition attempts to recognizewords and letters within handwritten script. Opti-cal character recognition is a related technologyused with desktop computers and optical scannersthat attempts to recognize printed or neatly writtenblock letters on paper forms. Speech recognitionis yet another pattern-matching technology that

facilitates entry of textual notes into a computerwithout using a keyboard. The technologies un-derlying handwriting recognition and speech rec-ognition are briefly surveyed in box 2-2. Speechrecognition systems capable of recognizing spe-cialized medical vocabularies have been availablefor several years. They typically cost several thou-sand dollars per computer workstation. None ofthe current implementations of speech recogni-tion for clinical use is portable; they are usuallydeployed to reduce the delay and potential for er-ror involved in transcribing recorded notes, ratherthan as data collection devices at the point of care.Speech recognition systems are also useful in situ-ations where notes need to be taken, but the clini-cian’s hands are not free.

Another approach to making data collectionimmediate and accurate involves gathering all thedata generated by the suite of medical monitorsand therapeutic devices at the bedside without hu-man intervention. Automated data collectionhelps reduce the number of errors introduced andpropagated by end-of-shift recordkeeping59 andreduces the 40 to 60 percent of nurses’ time that isspent taking and organizing notes and charting pa-tient care.60 It supports vigilant care by employingcomputers to constantly monitor critical physio-logical variables and call attention to dangerousconditions, and by allowing caregivers to checkon current patient status and developing trendsfrom afar. By providing accurate and timely de-pictions of patient status, automated data collec-tion affords greater assurance that computer-based decision support tools will provide correctinformation on which to base a clinical decision.61

58 S.E. Labkoff et al., “The Constellation Project: Access to Medical Reference Information Using Personal Digital Assistants,” Proceed-

ings of the Eighteenth Annual Symposium on Computer Applications in Medical Care, vol. 18, 1994, p. 1024.

59 R.M. Gardner et al., “Real Time Data Acquisition: Experience with the Medical Information Bus (MIB),” Proceedings of the Fifteenth

Annual Symposium on Computer Applications in Medical Care, vol. 15, 1991, pp. 813-817.

60 B.W. Childs, “Bedside Terminals: One of the Answers to the Nursing Shortage,” Healthcare Informatics, vol. 7, No. 12, 1990, p. 37.61 T.P. Clemmer and R.M. Gardner, “Medical Informatics in the Intensive Care Unit: State of the Art 1991,” International Journal of Clinical

Monitoring and Computing, vol. 8, No. 4, 1992, pp. 237-250.


BOX 2–2: Speech and Handwriting Recognition

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BOX 2–2: Speech and Handwriting Recognition (Cont’d.)

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�� :30�� 44��


Unfortunately, gathering data from medical mon-itors is not a straightforward task because differentdevices use different communication protocolsand physical connections. Box 2-3 describes theMedical Information Bus standard that is a pro-posed solution to this problem.

❚ Data Distillation ToolsCollecting clinical data as they are generated isonly the first aspect of the difficult problem of as-sembling digital patient records. As health careprofessionals manually enter data in conventionalpaper records, they perform several crucial but im-plicit tasks. They make judgments about the valid-ity of the data, often mentally filtering a rapidlychanging display or perhaps reconciling readingsfrom one instrument with those of other instru-ments measuring the same quantity. They certifydata as relevant by entering them in the record andreject aberrant observations, such as heart ratemeasurements made on a patient having a fit ofcoughing. They convert the data into a standardformat, with the physical layout of paper formsserving as an interface that structures the informa-tion and highlights its important parts for doctorsand other clinicians. Professionals think aboutwhat the data they are recording indicate about thepatient’s condition. Finally, they alert other care-givers if their observations suggest a criticalcondition.

Data distillation is an informal label for the ap-plication of a set of diverse information technolo-gies in the attempt to automate these secondaryfunctions traditionally performed as rapid, skilledhuman judgments. One expert has observed:

The great mass of useful numbers we gener-ate by computer has got to be tamed and con-trolled. We have learned how to make themeasurements. Now we must learn how to han-

dle the resulting data and present them in under-standable terms. Used right, automation canintegrate these data, simplify them, scan andevaluate them. Automation is not a cold-blooded monster-machine between us and thepatient. It is a tool to expand our medical power,to let us get closer to the patient, and take bettercare of him.62

Concerns about how to extract meaning from aperceived flood of health data are not new. Theywere mounting even in the early 1900s whenHarvey Cushing began arguing for the necessityof regular monitoring of blood pressure.63 Datadistillation technologies can help refine problem-atic medical data and inform clinical decision-making. In administrative and research contexts,they can also be used to discover patterns and cor-relations within massive compilations of healthinformation, an undertaking less tractable tomanual human effort.

Early computerized attempts to distill clinicaldata sometimes tried to fully automate the diag-nostic process. The programs asked the clinician aset of questions about a patient and then used theanswers to navigate among a branching set ofmutually exclusive alternative diagnoses. Theythen delivered the conclusion in oracular fashion;unfortunately, the conclusions were sometimeswrong, and few doctors suffer oracles gladly.These logical decision-tree systems overlookednot only the complexity, but the subtlety of medi-cal decisionmaking.

More recent systems attempt to support clini-cians’ thought processes, rather than supplantthem. Three types of data distillation systems incommon use are pattern recognition systems, neu-ral networks, and knowledge-based expert sys-tems. Pattern recognition is frequently used inmedical monitors to recognize emerging trends.

62 J.J. Osborne, “Computers in Critical Care Medicine: Promises and Pitfalls,” Critical Care Medicine, vol. 10, 1982, pp. 808-810.63 H. Cushing, “On Routine Determination of Arterial Tension in Operating Room and Clinic,” Boston Medical Surgical Journal, vol. 148,

1903, p. 250, as cited in R.M. Gardner, “Medical Data: Their Acquisition, Storage, and Use,” Medical Informatics: Computer Applications inHealth Care, E.H. Shortliffe and L.E. Perrealt (eds.), G. Wiederhold and L.M. Fagan (assoc. eds.) (Reading, MA: Addison-Wesley, 1990), p.369.


BOX 2–3: Automated Data Collection and the Medical Information Bus

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Electrocardiogram monitors, for instance, oftenaverage the shape of a patient’s ECG trace forabout 20 heartbeats in order to build a profile of a“normal trace.” Subsequent traces are thencompared to the normal trace; if they differ signif-icantly, they are classified as aberrations and analarm can be passed on to a caregiver. Moreover,the aberrant signals can themselves be sorted ac-

cording to their shapes and a library assembled ofarrhythmia specific to the patient. Further tracesare then compared to the patient’s own customizedlibrary of heart problems, and the urgency of analarm matched to the severity of the abnormali-ty.64

Another type of pattern recognition can be im-plemented using arrays of interconnected simple

64 Gardner, “Patient-Monitoring Systems,” Medical Informatics: Computer Applications in Health Care, ibid., p. 382.


BOX 2–3: Automated Data Collection and the Medical Information Bus (Cont’d.)

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processors65 called artificial neural networks.Each processor makes a simple calculation basedon the values of a small number of input variablesthat might be physiological measurements for apatient. The output of the calculation for eachprocessor serves as the input for other processorsin the network. The network can be trained by us-ing its overall output to adjust the strengths of theconnections between various processors. Ideally,a neural network might be exposed to comprehen-

sive sets of physiological data gathered frommany patients who died from sudden pulmonaryembolisms, and then trained through the feedbackprocess until its output is consistent for all the pa-tients. If that feat could be accomplished, the net-work would then have “learned” which features inthe data set reliably indicate imminent pulmonaryembolisms, and it could then be used to monitorother patients. One problem is that comprehen-sive, comparable data sets covering multiple pa-

65 The processors are usually simulated in software rather than being discrete electronic chips.


tients are very rare. One of the benefits of digitalrecordkeeping might be the compilation of datasets that could be used to train artificial neural net-works for clinical decision support.

Most of the decision support systems that issuealerts and warnings based on clinical data areknowledge-based systems, which attempt to inter-pret information about a patient using expertisecaptured in a computerized database known as aknowledge base. In a simple implementation, ap-propriate actions or diagnoses for a patient couldbe identified by matching words used by doctorsin their written encounter records with termsfound in a library of disease descriptions or knownpatient cases. More typically, expertise is capturedas a large set of heuristics (rules of thumb) ratherthan as textual descriptions. Knowledge engineersdesign these rule-based expert systems by inter-viewing medical experts and constructing rulesets based on the experts’ practical experiencesand insights, institutional policies, and the medi-cal research literature. A typical rule used with aventilator might read, “If a patient’s spontaneousbreathing rate changes by more than 10 percentand the change is larger than five breaths per min-ute and the breathing rate is between 0.5 and 70breaths per minute and the ventilator mode waschanged within the last minute, then bring thechange to the attending physician’s attention.”66

An inference engine coordinates the process of ob-taining information from the patient record or cli-nician, finding applicable rules, and reconcilingthe conclusions of multiple rules if the clinicaldata match more than one. Expert systems workwell in narrow application areas such as determin-ing appropriate antibiotic treatments. They areless successful in supporting decisions in broadly

defined application areas because it is difficult todefine and maintain a complete, up-to-date set ofrules. One implementation of a rule-based expertsystem in a hospital setting is the HELP system,profiled in box 2-4.

Distillation tools are also important for healthadministration and research after clinical and ad-ministrative data have been abstracted from indi-vidual records and stored in large institutionaldatabases. Relational databases organize datainto sets of two-dimensional tables and allow us-ers to retrieve information from specific rows andcolumns in the tables using brief requests in aquery language. While a relational databasemight be used to store the clinical and administra-tive data for the patients in an HMO, the data real-ly represent a complex multidimensional data set.It might be very difficult, for instance, to assemblewith a query all the data necessary for a cost-of-care analysis of a set of interventions using severaldifferent measures of resource consumption overtime in different units of the HMO. Online analyt-ical processing is a database query technique thatis optimized to support decisionmaking using in-formation from complex, multidimensional datasets.67 Querying techniques find sets of recordswithin a database that fit a desired pattern. Knowl-edge discovery techniques address the oppositeproblem: they attempt to identify patterns usefulfor describing a specified data set. For instance, atypical medical research data set generated in amulticlinic randomized trial designed to studysurgical interventions to control lipids contribut-ing to atherosclerosis included 1,400 variablesmeasured on 838 patients for 7 to 14 years.68

Knowledge discovery techniques can be used to

66 T.D. East, W.H. Young, and R.M. Gardner, “Digital Electronic Communication Between ICU Ventilators and Computers and Printers,”

Respiratory Care, vol. 37. No. 9, 1992, pp. 1113-1123.

67 A. Radding, “Blue Cross Climbs Mountain of Data with OLAP,” Infoworld, Jan. 30, 1995, p. 64.68 H. Buchwals et al., “The Program on the Surgical Control of the Hyperlipidemias,” Surgery, vol. 92, No. 4, 1982, p. 654.


BOX 2–4: The HELP System

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BOX 2–4: The HELP System (Cont’d.)

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find useful correlations or causal connectionsamong the variables in such large databases; thecorrelations that are found can then serve as aknowledge base for a rule-based expert system.69

❚ Storage and Compression TechnologiesClinical monitoring and imaging devices spawncopious amounts of data. For example, pulse oxi-meters report with every heartbeat the con-

69 J.M. Long et al., “Automating the Discovery of Causal Relationships in a Medical Records Database,” in Knowledge Discovery in Data-

bases, G. Piatetsky-Shapiro and W.J. Frawley (eds.) (Menlo Park, CA: AAAI Press/The MIT Press, 1991), pp. 465-476.


TABLE 2–2: Storage Requirements for Imaging TechniquesÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁ

Modality

ÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁ

Image size (pixels)


Dynamic range(bits)


Average numberof imagesper exam

ÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁÁ

Average storagerequirement

per exam (MBytes)

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centration of dissolved gases in the blood. Trans-ferring this oxygenation data directly into the re-cord would generate about 1.5 million bytes ofinformation per day per patient—equivalent toabout 400 pages of numbers—and the majority ofthe data would never be accessed again.70 Institu-tions that develop systems for rapidly collectingand distilling large quantities of health informa-tion will need to judiciously moderate their appe-tites for information and refine their skills fordetermining which data can be safely discarded.Nonetheless, the demand for permanent storage ofpatient records is growing rapidly.

Some storage technologies make selected por-tions of patient records portable. Many institu-tions issue the ubiquitous magnetic stripe card totheir patients for identification purposes. Thesecan store about 250 text characters, enough to holda patient’s name, address, identification number,date of birth, copayment information, and a briefpassword. They are widely used in combinationwith low-speed modem networks to verify pa-tients’ eligibility for insurance benefits. Smartcards are the same size as credit cards, but theyhave embedded computer chips and enough staticmemory to hold several pages of textual informa-

tion. Laser optical cards have an even greater stor-age capacity, although once information is writtenonto the cards it typically cannot be altered or sup-plemented. None of these card technologies canreplace computer-based patient records becausethey are vulnerable to loss and fail to provide con-tinuous access to an individual’s health data. Theymay be widely employed, however, to carry emer-gency medical information and the demographicinformation necessary to coordinate a patient’s ac-cess to services at multiple sites. Smart cards havebeen used in several states to coordinate deliveryof multiple social programs, such as Medicaid andthe Women, Infants, and Children nutritional pro-gram (WIC), and to replace paper vouchers andfood stamps.71 They are widely used in Europeanhealth care systems. An infrastructure of smartcard readers has not developed yet in the UnitedStates, largely because the existence of a reliableand relatively cheap telecommunications systemhas made modem communications and magneticstripe cards a more attractive way to exchangesmall amounts of data.72

The storage requirements for textual and nu-merical data in patient records are dwarfed by thestorage space requirements shown in table 2-2 for

70 East et al., op. cit., footnote 27.71 Phoenix Planning and Evaluation, Ltd., op. cit., footnote 16.72 Card technologies are discussed more fully in chapter 3, box 3-4.


BOX 2–5: Digital Image Compression

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medical images such as x-rays, magnetic reso-nance images, and computed tomography scans.These new imaging technologies challenge theability of information systems to store and processdata, but they enable the development of new gen-erations of highly localized surgical and radiationtherapies that otherwise would not be possible.The computational resources necessary for medi-cal imaging will continue to grow with the in-creasing use of high-resolution spatial imaging, inwhich multiple images are assembled into a three-

dimensional model, and with the development offunctional imaging, where processes such as therate of oxygen metabolism in a particular bodystructure are studied by assembling multiple co-pies of the same image over time.

Conventional films from x-ray and nuclearmedicine images are converted to electronic formusing laser digitizers, but many other imagingtechnologies produce digital images from the out-set. In some cases, images are compressed usingtechnologies like those described in box 2-5 to re-


BOX 2–5: Digital Image Compression (Cont’d.)

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duce transmission times and storage space re-quirements. Medical images are typically storedand manipulated on large hard drives, similar tothose in desktop computers, and then transferredto digital tape, magneto-optical disks, recordableCD-ROMs, or COLDs (Computer Output to LaserDisks) for archival storage. The latter threetechnologies use light beams to store and recordinformation on durable plastic or magnetic disks.Although the disks themselves are likely to last formany decades, it is not clear that the equipmentnecessary to read the disks will be manufacturedthroughout the life of the medical information.

Medical imaging is an ideal domain for integra-tion of information technologies. The variousimaging machines are expensive and so highlyspecialized that no single vendor can impose pro-prietary standards on vendors of different types of

machines. The imaging machines can share thesame type of displays and data manipulation com-puters, however, and this has encouraged the de-velopment of broad data exchange standards.Radiology and nuclear medicine are consultativedisciplines, but since the images need not be inter-preted at the site where they are collected, con-sultations can be carried out at a distance or evenover telemedicine links. Radiologists usually ex-amine images displayed with the highest possibleresolution, but primary care physicians who relyon their interpretations may also wish to have ac-cess to lower resolution copies of images in orderto explain the interpretations to patients. Finally,an economic incentive exists for developing fullydigital image storage: medical images are amongthe most commonly misplaced or unavailable re-cords. Some 40 percent of all x-ray films are unre-


trievable, making it necessary to repeat imagingprocedures and extend hospital stays.73

Information systems that manipulate, store,and share digital medical images are called PACS,or picture archiving and communications systems.PACS typically capture data directly from animager or a laser film digitizer, and then allow us-ers to share and modify them using a computer, acommunications network, a large storage system,and a high-resolution display. The communica-tions between hardware components are governedby a mature standard for PACS developed by acommittee of the American College of Radiologyand the National Electrical ManufacturersAssociation.74 The DICOM (Digital Imaging andCommunications in Medicine) standard is one ex-ample of a communications standard. It definescommon formats for data generated by imagingequipment and standard actions that can be per-formed on the images. It specifies how messagesabout the data and the processing actions can beexchanged among machines.

The DICOM standard also specifies ap-proaches to compliance reporting and testing.Vendors that sell machines purporting to adhereto the DICOM standard must publish compliancestatements indicating which portions of the stan-dard are implemented. Hospitals can then comparecompliance statements for all the equipment theypurchase and build a functional PACS system us-ing equipment from a variety of vendors. This isone example of how the development of industry-specific voluntary standards can help remove bar-riers to technology implementation.

The character of radiological practice is chang-ing as PACS develop. PACS make it easier for pri-mary doctors to consult radiologists, but they also

enable doctors to examine radiological imagesfirsthand and make their own interpretations.75

The development of PACS may eventually helptransform radiology into more of a laboratory ser-vice than an independent medical discipline inhospitals.

❚ Display and Retrieval of DataMost hospital information systems use the normalgraphical and textual interfaces found on desktopcomputers, thus exposing their legacy as primari-ly administrative information systems. It is notclear, however, that interfaces developed for ad-ministrative and business applications will be ad-equate for conveying the huge amount of clinicalinformation that will become available if patientrecords are fully digitized. The stakes are high be-cause floods of new data make it increasingly like-ly that people will overlook important parametersand make faulty judgments.

Consider the difficulties in presenting all thetypes of information in the patient record on asingle computer display. One candidate for such alocus of information might be bedside patientdata management systems, which are dedicatedcomputers connected to various physiologicalmonitors for a patient in an intensive care unit.Currently, they need to display physiological datafrom up to 10 monitors, either as text or wave-forms. If those data are to be entered automaticallyinto electronic records rather than summarized onpaper forms, the interface must provide ways forusers to attach vocal or textual annotations to thedata.76 If the bedside computer is to be linked tothe broader hospital information systems, the in-terface must then be able to cluster associated data

73 S.C. Horii et al., “A Comparison of Case Retrieval Times: Film Versus Picture Archiving and Communications Systems,” Journal of

Digital Imaging, vol. 5, No. 3, 1992, pp. 138-143.

74 American College of Radiology, National Electrical Manufacturers Association, “Digital Imaging and Communications in Medicine

(DICOM): Version 3.0,” Draft Standard, ACR-NEMA Committee, Working Group VI, Washington, DC, 1993.

75 H.L. Kundel, S.B. Seshadri, and R.L. Arenson, “Clinical Experience with PACS at the University of Pennsylvania,” Computers and Medi-

cal Imaging Graphics, vol. 15, No. 3, 1992, pp. 197-200.

76 E.H. Shortliffe and G.O. Barnett, “Medical Data: Their Acquisition, Storage, and Use,” Medical Informatics: Computer Applications in

Health Care, E.H. Shortliffe and L.E. Perrealt (eds.), G. Wiederhold and L.M. Fagan (assoc. eds.) (Reading, MA: Addison-Wesley, 1990).


from a broad variety of sources according to pa-tient status: if a patient has an electrolyte imbal-ance, for instance, all the relevant laboratoryresults, dietary information, and treatment ordersshould be displayed alongside blood chemistrydata from a bedside analyzer. Because medical de-cisions are usually made with information from awide variety of sources, including laboratoriesand radiology departments, the display must ac-commodate textual notes and display high-resolu-tion images77 and video.

By now, the display is getting a bit cluttered,but there is more. Clinical decision support mightbe implemented at the bedside so clinicians can bealerted to potentially dangerous situations, such asdrug-drug interactions and critical changes in lab-oratory and physiological parameters. If so, thenthe screen must not only display the alerts, butprovide contextual information so they can beevaluated; it will need to show an appropriateamount of historical data along with the currentdata. To enable clinicians to act on whatever deci-sions they make, the display must provide chart-ing and order-entry forms. If administrativefunctions are integrated as well, the display willneed to notify clinicians of the prices of the medi-cations and lab tests they order, and displaye-mail, calendars, and scheduling information. Itmust do all these jobs without the aid of the manytools and customizations that help users cope withdesktop computers because bedside computersneed a standardized interface to accommodatemultiple users.78 And on top of all that, the inter-face should provide for easy editing and annota-tion of all the types of information mentioned thus

far, as well as robust security and methods for cli-nicians to disavow data that they do not trust ordeem irrelevant.

All of these objectives have to be accomplishedon video monitors smaller than a standard pieceof paper. In fact, the standard piece of paper re-mains the main competitor to video displays formost of the information tasks listed above, andmany institutions that have implemented the mostcomprehensive computer-based patient recordsincorporate high-volume printing as their in-formation distribution medium.79 Printed pagescan display up to 20 times more information in agiven area than standard computer monitors.80

Even computer displays with high-resolutiongraphic monitors often sacrifice much of the avail-able display area to a plethora of semi-permanent“buttons” and other interface elements designedto receive information from users rather than con-vey information to them.

It is not clear that the display techniques suit-able for desktop computers or current-generationpatient data management systems are appropriatefor high-bandwidth display of clinical informa-tion. Interface designers have developed very ef-fective techniques for conveying complicateddata to users (in aircraft cockpits, for example) andfor receiving complicated data from users (viaspreadsheets and word processors), and even forletting users browse within complicated data sets(through hypertext and graphical database front-ends). The medical environment is a curious mixof those three situations. Design approaches thatare sufficiently capable may not yet haveemerged. Many of the frustrations evinced in pilot

77 Current monitors used at the bedside have neither the spatial resolution nor the dynamic range to display diagnostic-quality radiologicalimages.

78 This consideration is less critical for long-term users who might design customized presentation configurations to be displayed accordingto their preferences whenever they use a computer. Nonetheless, the basic functionality of the health information system and the accessibilityand interpretability of data it presents must not rely on such customizations because the systems are often used by a rapidly changing ensembleof users with little time for training.

79 C.J. McDonald et al., “The Regenstrief Medical Record: 1991 A Campus-Wide System,” Proceedings of the Fifteenth Annual Symposium

on Computer Applications in Medical Care, vol. 15, 1991, pp. 925-928.

80 This is a conservative estimate. For a discussion of high-density information display, see E.R. Tufte, Envisioning Information (Cheshire,

CT: Graphics Press, 1990), pp. 37-51.


projects are due to inadequate solutions to human-computer interface problems. In the absence ofnew developments, the displays at the patient’sbedside, the nursing station, and the physician’sdesktop are potentially “choke points” throughwhich most of the benefits of a fully computerizedpatient record may fit only awkwardly. The ad-vantages of the computer-based patient recordmay be elusive, if only because they cannot be en-visioned.

❚ Data SecurityPeople reveal highly sensitive information tohealth professionals. If clinicians or institutionsmisuse or misrecord the confidential information,it might be used to restrict or revoke a person’shealth insurance or revise judgments of their suit-ability for a job or a loan. When such mistakes aremade, it is often difficult for the individual to cor-rect them or hold anyone accountable. Any newhealth data recordkeeping system must ensure thatinformation is used appropriately or people willavoid using it. In a 1993 Harris-Equifax poll, 27

percent of those responding indicated that theirpersonal health care information had already beenimproperly disclosed and 71 percent indicatedthat they felt that use of computers would need tobe restricted in order for privacy to be protected.81

Several issues are involved. First, health in-formation needs to be confidential: it should beused only for approved purposes and shared onlyamong authorized people typically associatedwith the patient by a special relationship, such asthe physician-patient relationship. Second, an ap-propriate level of privacy for the information mustbe established: some balance must be struck be-tween an individual’s right to keep informationconfidential and the benefits that can accrue to so-ciety if the information is shared more broadly. Fi-nally, the records must have adequate security:administrative and technical measures must pro-tect them from unwarranted loss, modification, ordissemination. Several technological approachesto securing electronic patient records by restrict-ing access are discussed in box 2-6. Maintainingthe privacy, confidentiality, and security of patientrecords presents organizational and political

BOX 2–6: Security Technologies

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��$� ��"!� � �� %�� %� �� ! � ��!��! � �� !�� !�� "�� !�� $�� !��

�!�� !��"� � !�� "��!�� !�� !�� "�� !�� !�� %��&�� !�

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��

81 Louis Harris and Associates, A.F. Westin, The Equifax Report on Consumers in the Information Age (Atlanta, GA: Equifax, 1990).


BOX 2–6: Security Technologies (Cont’d.)

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challenges as well as technical challenges; theseissues have been discussed in detail in an earlierOTA report.82

When institutional security standards govern-ing the handling of paper-based patient records areinadequate, the records can easily be lost orviewed and copied without leaving any trace ofthe action. Still, while the confidentiality of paper-based records is easily compromised by autho-rized people who misuse their access to patientinformation, the sheer bulk of paper records helpskeep them private: information is not easily ab-stracted from paper records. The fluidity of com-puter-based patient records, however, makessecuring their confidentiality more problematic.

One of the benefits of computer-based recordsis that information can be used for multiple pur-poses. The effectiveness of a certain AIDS treat-ment might be evaluated, for instance, bycomparing the outcomes of various treatments fora panel of individuals enrolled in a controlledstudy. Unfortunately, even if patients’ names areremoved from copies of the relevant informationextracted from their records, their identities canoften be determined by correlating the data withinformation in other publicly available electronicdatabases. One challenge is to develop identi-fiers for patients and providers that will allowmedical data to be exchanged among various in-formation systems without compromising the pa-tients’ privacy.

In addition to developing unique identifiers, aset of privacy principles need to be establishedthat govern who can access health information andhow they may use it. Many private and public sec-tor groups have developed strategies and policiesfor protecting the privacy of health information.For example, the Privacy Working Group of theInformation Policy Committee, Information In-frastructure Task Force has published a set of draft

principles for providing and using personal in-formation in all contexts, including health care ap-plications.83 Among other provisions, theseprinciples direct those who plan to collect person-al information to assess the impact of those planson individual privacy and to limit the amount ofinformation collected to that necessary for theirimmediate use. In addition, they should inform in-dividuals why their information is being col-lected, how it will be protected, and how it will beused, and they should take reasonable steps to pre-vent the disclosure or improper alteration of per-sonal information. The principles also chargeindividuals with the responsibility to understandthe consequences of releasing personal informa-tion and to discern how and why their informationis being collected. The working group’s principlesencourage both education about the uses of per-sonal information and the establishment of rightsof redress for privacy abuse. Legislative actionmay eventually be appropriate to guarantee theprivacy of health information as consensus devel-ops on appropriate policies.

❚ High-Bandwidth CommunicationsWithout telecommunications and networkingtechnologies, information is confined to the com-puter in which it is created. In addition to the tradi-tional uses of telecommunications for phoneconversations and paging, there is an increasingneed for remote communications to transfer digi-tal health information. Physicians might wish touse computers at home to track the status of pa-tients or receive notification of important lab re-sults. Group practices might submit batches ofinsurance claims to data-processing intermedi-aries electronically and remind patients of up-coming appointments using automated phonesystems. The term “house call” might reenter the

82 U.S. Congress, Office of Technology Assessment, Protecting Privacy in Computerized Medical Information, OTA-TCT-576 (Washing-

ton, DC: U.S. Government Printing Office, September 1993).

83 Office of Management and Budget, “National Information Infrastructure: Draft Principles for Providing and Using Personal Information

and Commentary,” Federal Register, vol. 60, No. 13, Jan. 20, 1994, pp. 4362-4370.


medical lexicon with the advent of in-home medi-cal monitoring devices for elderly or chronicallyill patients, devices that can deliver basic physio-logical information to doctors via modem. Hospi-tals might link their information systems toremote medical databases or support videoconfer-encing and telemedicine applications to broadentheir base of patients in the community. Integratedhealth delivery institutions might link computersat various sites into a single wide area network.Community health information networks (CHINs)might link various clinical institutions, compo-nents of the public health system, private medicalpractices, payers, data repositories, and academicinstitutions so that health information can beshared on a regional basis. The telecommunica-tions and networking technologies underlyingthese new health information applications are sur-veyed in box 2-7.

Individuals are also beginning to use telecom-munications and networking technologies to gainaccess to medical information. One of the mostprominent applications of broadband commu-

nications is the delivery of educational materialsvia the international network of computers knownas the Internet. Individuals can learn about healthissues and correspond with others who share com-mon interests by joining electronic mailing listsdedicated to discussions of specific medicalconditions. Many health care providers now pro-vide educational materials for patients, consum-ers, and doctors through World Wide Web pages,which are collections of pictures, text, sound, andvideo along with links to related information onother computers. The OncoLink Multimedia Can-cer Resource web page at the University of Penn-sylvania is shown in figure 2-2. From this page,computer users can navigate to many other pagesthat give them information about cancer terminol-ogy, ongoing clinical trials, how to prepare for ahospital visit, and many other topics.84 There is noincremental charge to access this or any of thehundreds of other web sites offering medical andhealth information on the Internet. However, ahome computer and modem are required, as wellas access to the network through an account pur-

BOX 2–7: A Voice and Data Communications Primer

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# �'/#� $)!*-(�/$*)�� ) � 2�4� /*� �).2 -� /#$.� ,0 ./$*)� $.� /*� ./�-/� 2$/#� �)� 0)� -./�)�$)"� *!� #*2� *-�$)�-4

/ ' +#*) � ��''.� 2*-&�� # )� �� '' -� .+ �&.� $)/*� �� +#*) � (*0/#+$ � �� ($�-*+#*) � �*)1 -/.� /#

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.2$/�#�� /# � ��''� "* .� /#-*0"#�� /# -2$. �� $/� $.� +�.. �� /*� */# -� .2$/�# .� *2) �� 4� /# � .�( � �� 2$/#$)� �

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.$5 .�� /*� "*� � 4*)�� /# � �*0)��-$ .� *!� �� .$)"' � � � �� /# � ��''� (0./� � � +�.. �� /*� �)� ��

�� .0�#� �.� �� +-$)/�� $'� '�� *-� */# -.�� /� /# � !�-� )�� /# � ��''� (0./� �"�$)� +�..� /#-*0"#� /#

. -$ .� *!� .2$/�# .� *2) �� 4� �� $!! - )/� �� 0)/$'� $/� �--$1 .� �/� $/.� � ./$)�/$*)�

��

84 “OncoLink,” University of Pennsylvania, April 1995. <URL: http://oncolink.upenn.edu>


BOX 2–7: A Voice and Data Communications Primer (Cont’d.)

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chased from an Internet service provider or a com-mercial online service.

High-bandwidth communications may have aprofound effect on the structure and process ofhealth care services analogous to the changes thatautomated teller machines brought to the banking

industry. Already, demand management systemsare in place within some integrated HMOs; nursesin centralized locations use telephones to give ad-vice for managing particular health problems topatients located throughout the HMO’s servicearea. Consultative practices such as radiology and


FIGURE 2–2: Health Information on the Internet

�� '�� %�!"�#&� �� "&�%�� !�� ## ��$ ��$�

dermatology are slowly beginning to use high-bandwidth communications over dedicated phonelines to practice telemedicine. As switched high-bandwidth connections become widely available,a dramatic change could occur in which the hub-and-spoke topology of most telemedicine net-works (with an academic hospital at the hub ofmost consultations) may dissolve into a more dy-namic network, and a competitive market forhealth advice may emerge. Individuals mayeventually be able to get expert information abouttheir health in more convenient ways than fromtheir doctors.

❚ Distributed Computing andObject-Oriented Software

Health care information systems, like most otherlarge computer applications, were designed for

many years around the capabilities of powerfulmainframe computers. Users gained access to in-formation stored in the large databases of a centralcomputer using relatively slow, text-based termi-nals. Although the central computer might be veryfast, it had to perform many duties. Its perfor-mance in responding to a user’s request for a pa-tient’s admission records, for instance, might beslow if it were occupied with another calculation-intensive task, such as preparing a monthly pay-roll.

As the speed and capabilities of desktop com-puters and networks have increased, the central-ized, hierarchical structure associated withmainframe computers is being replaced in manyinstances with distributed computing using a cli-ent-server architecture. The many tasks per-formed by a monolithic central computer are


decoupled, and the workload dispersed among aseries of programs running on a set of smallercomputers, or servers. Each server handles a spe-cific task, according to requests made by otherprograms, or clients, on the network.

Typically, users interact with client programsrunning on desktop computers with relatively so-phisticated graphics capabilities. A client pro-gram for scheduling patient surgery, for instance,might issue requests for information to serversthroughout the institution. A request might be fora discrete piece of information, such as the pa-tient’s admission date, which could be retrievedfrom the admissions database. The request couldalso be more complicated: it could spawn a so-phisticated scheduling calculation on an adminis-trative server that itself required informationevoked from other servers. The client programmelds the information from the various sourcesand displays it to the user. The data and the com-putational resources of the information system aredistributed throughout the institution rather thanbeing localized in a centralized computer. Thefailure of any one computer is unlikely to compro-mise the entire system. In addition, if the admis-sions server were heavily used, the departmentmight maintain a number of different servers, withthe load being passed to the server that is least bur-dened at a given moment. Thus, capacity can beadded incrementally to a client-server network.

Client-server computing replaces large, centralcomputers with interacting networks of servers,each accomplishing specific tasks and communi-cating with standardized messages. A similartrend known as object-oriented design is affectingthe internal structure of computer software. In-creasingly, developers are decoupling large, mul-tipurpose software applications into sets ofinteracting objects. For instance, a common taskfor a software designer might be to change thetype of information in a record—perhaps makingroom for nine-digit zip codes instead of five-digit

zip codes. With traditional software design, thistype of change might require changing all of theroutines that ever manipulate zip codes, includingprinting routines, file storage routines, sortingroutines, and so on. These routines could be scat-tered throughout the code, and finding and alter-ing them is a difficult and time-consumingproject. Moreover, changing any of the routinescould have unintended consequences elsewhere inthe program for other data that use the same rou-tines. Object-oriented design bundles all of theseroutines along with the zip code itself into an en-capsulated object. Thus, all the zip code routinescan be easily changed and tested, without affect-ing any of the rest of the software in the project.

Ideally, object-oriented design can lead to soft-ware code that is modular and reusable. Compli-cated software applications can be built rapidlyfrom standardized libraries of classes of objects.This new software paradigm may pose significantchallenges for regulatory structures governingdistribution of medical software. Currently, medi-cal software is regulated by the Food and DrugAdministration (FDA) under the same systemused for medical devices. Before marketing theirproducts, vendors must register their medical soft-ware with the FDA and obtain official approval ofits safety and effectiveness. Vendors must docu-ment their design process and demonstrate thatpotential safety hazards associated with softwarecomponents have been identified and addressed.

Several categories of software are exempt fromthis process, including general-purpose softwaresuch as word processors, software designed foruse in teaching, nonclinical research, or privatepractice, and knowledge-based systems that re-quire human intervention before any impact onhuman health could occur.85 This policy may beadequate for medical software embedded in physi-cal devices or distributed through conventionalchannels, but it may prove cumbersome as moreresearch institutes become linked by the Internet.

85 Office of Device Evaluation, Center for Devices and Radiological Health, Food and Drug Administration, “Reviewer Guidance for Com-

puter Controlled Medical Devices Undergoing 510(K) Review” (Washington, DC: 1991).


Software developed for academic research pur-poses is commonly distributed at no charge to oth-er researchers using a procedure known as ftp, orfile transfer protocol. In the absence of a clearFDA policy regarding electronic distribution ofmedical software, concerns that the FDA maytreat distributors of free software as medical ven-dors have delayed the ftp distribution of at leastone product intended for calculation of radiothera-py treatment doses.86

In addition, the policies deal inadequately withsoftware developed using object-oriented designand perhaps assembled from components writtenby a variety of sources and only assembled by thefinal vendor. The exemption from regulation forgeneral-purpose software raises the possibilitythat vendors could avoid FDA oversight of theirproducts by selling a general-purpose “shell” pro-gram that could then link together modules withmedical functionality that had been distributed viaftp at no charge.

Finally, the distinction between source codeand object code for a computer program is becom-ing a key issue—source code is written in a com-puter language such as C++ or FORTRAN andcan be altered by any competent programmer,whereas object code is a translation of the sourcecode into a form executable by a particular ma-chine. To ensure uniformity of approved software,the FDA has typically allowed vendors to distrib-ute only the object code for their computer pro-grams because it cannot be easily altered by theend-user. A similar restriction on electronicallydistributed software is problematic, however. Dis-tribution of source code may be protected by thefirst amendment, and such a restriction wouldhave a burdensome effect on academic researchand prevent cross-verification of the soundness ofcode design by independent groups. The FDA is

currently reviewing and revising its policies onregulation of medical software.

SHARING THE COMMON POOL OF DATA

❚ StandardsStandards are agreements on how to implementtechnologies. They allow buyers to choose com-patible medical equipment and software from avariety of vendors, and thus encourage both in-novation and price competition. Sometimes defacto proprietary standards emerge when a singlevendor controls a large share of the market for aparticular item. Consensus standards are devel-oped by committees with representatives frommany different stakeholders. The committees caninclude representatives of vendors, the medicalcommunity, the government, unions, and any oth-er interested individuals who choose to participatein the laborious process of writing and agreeing onstandards. Standards committees are accreditedby organizations such as the American Society forTesting and Materials (ASTM), the American Na-tional Standards Institute (ANSI), or by other na-tional or international organizations.87 They meetover a period of years and develop drafts thatmembers of the committee vote on after extendedrevisions and public review. Standards bodies oc-casionally have problems reaching decisions asrapidly as new technologies are developed.

Understanding consensus standards is compli-cated in that the name of an individual standard isusually an acronym that reflects the identity of thestandards committee, rather than the function ofthe standard. Figure 2-3 shows the alphabet soupof interrelated messaging standards for exchang-ing data among various parts of a hospital: stan-dards written by ASTM Subcommittee E31.15specify the format for messages traveling to and

86 “Council on Competitiveness Identifies Telemedicine Barriers in Report Summarizing Fall Conference,” Healthcare Telecom Report,vol. 3, No. 1, Jan. 2, 1995; and Edward L. Chaney, Professor, North Carolina Clinical Cancer Center, University of North Carolina, personalcommunication, May 1, 1995.

87 A complete description of the standards-setting process can be found in , U.S. Congress, Office of Technology Assessment, Global Stan-

dards: Building Blocks for the Future, OTA-TCT-512 (Washington, DC: U.S. Government Printing Office, March 1992).


FIGURE 2–3: Messaging Standards for Clinical Institutions

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from knowledge bases, ANSI X12 standards gov-ern communication of financial data to insurersand others outside the health care institution, theNCPDP standard developed by the NationalCouncil of Prescription Drug Pharmacies speci-fies the format for messages containing pharma-ceutical information, and so on. Purchasers ofhealth care equipment and software can more easi-ly build extensible systems by buying items thatstore and exchange information according to oneor more of these consensus standards rather thanproprietary standards.

A model of communications published by theInternational Standards Organization describesseven different levels of computer communica-tions, beginning with physical interconnectionsand ending with the standards that specify howmessages are passed between software applica-tions (the seventh level). One of the most widelyused messaging standards is the HL7 (Health Lev-el Seven) standard for electronic interchange ofhealth data.

HL7 is explained in more detail in box 2-8.Most of the standards in figure 2-3 are conceptual-ly similar to HL7 and closely related to it. Forinstance, standards written by ASTM Subcom-mittee E31.16 specify the format for messagescontaining neurophysiological data. These mes-sages use the same syntax, and most of the samesegments, as HL7 messages, but they include datastructures for continuous waveforms such as elec-troencephalogram traces.88 HL7 was originally astandard for communicating laboratory data andother clinical observation data between softwareapplications, but it now includes structures forcommunicating clinical orders, billing informa-tion, and patient admission, discharge, transfer,

and registration information within single institu-tions.

This suite of standards has brought a modicumof order to the varied approaches to sending mes-sages within and among health care institutions.Each standard defines the structure of messageswithin a certain jurisdiction. But what happenswhen a measurement generated by a laboratoryinstrument and formatted according to the ASTME1394 standard needs to be passed to a bedsidemonitor that normally formats information ac-cording to the P1073 standard? Individual stan-dard-to-standard translation schemes could bedesigned, but they would necessarily be inconstant flux as the various standards evolve. Toaddress these types of problems, ANSI created aHealth Informatics Standards Planning Panel(HISPP) in 1993 to coordinate standards develop-ment efforts. A number of working groups haveformed under the aegis of HISPP, each made up ofrepresentatives from organizations involved indeveloping health messaging standards. Oneworking group, for instance, is developing aframework for a common data model that willserve as an evolving guide and resource for all thevarious messaging standards. The framework willincorporate the innovations of the various stan-dards committees and harmonize their efforts overthe long term using an iterative process.89

The messaging standards in figure 2-3 definehow messages are communicated, but the contentof the messages is set by an entirely different set ofstandards. Some of these were developed in indus-trial or scientific settings, such as the “metric sys-tem” or Systemé Internationale that defines unitsof measurement. Others are specific to medicalcontexts. Standards are necessary for coding and

88 Moreover, the chair of the group working on automated data within the HL7 committee has agreed to include these same messageconstructs for transmitting wave forms in HL7 messages, and the same is true for other standards committees. Despite the diversity and multi-plicity of committees and working groups, the emerging standards are generally complementary.

89 T.E. Rutt, “Work of the IEEE P1157 Medical Data Interchange Committee,” International Journal of Clinical Monitoring and Comput-ing, vol. 6, 1989, pp. 45-57, and Trial-Use Standard for Health Care Data Interchange-Information Model Methods, Data Model Framework,P1157.1 Draft 1 (Piscataway, NJ: IEEE Standards Department, 1994).


BOX 2–8: HL7 and ICD–9–CM

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describing clinical procedures and diagnoses, aswell as administrative data. One of the commoncoding standards for describing medical diag-noses and procedures is the ICD-9-CM standard,which is described in more detail in box 2-8. In ad-dition, standardized vocabularies, such as the Sys-tematized Nomenclature of Medicine (SNOMED),are being developed to consistently and unambig-uously define medical terminology. The National

Library of Medicine (NLM) is currently combin-ing SNOMED and over 20 other systematized vo-cabularies describing specialized areas ofmedicine into a Unified Medical Language Sys-tem (UMLS). One part of the project is the UMLSMetathesaurus, a tool and guide for findingmedical information in databases designed forthose who develop information systems. NLMand the Agency for Health Care Policy Research


BOX 2–8: HL7 and ICD–9–CM (Cont’d.)

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(AHCPR) are funding other projects to standard-ize the code and vocabulary used to express clini-cal meaning by examining and combiningexisting large-scale medical vocabulary systems.Such codes will make it possible to pool data frommany sources in an electronic medical record andin community databases for management and re-search purposes.

❚ Research and IntegrationThis diverse body of standards may be laying thegroundwork for an expansion of the various inde-pendent technologies into new areas, as well as theemergence of integrated information systems likethe one depicted in the fictional scenario at the be-ginning of this chapter. Numerous efforts are un-


der way to facilitate that expansion. One exampleis the nonprofit Healthcare Open Systems andTrials (HOST) consortium.90 HOST is establish-ing test sites for deployment of new informationtechnologies at medical institutions and an OpenSystems Laboratory where the compatibility ofvarious technologies can be demonstrated. TheHOST consortium has recently received a grantthrough the Advanced Technology Program(ATP) at the National Institute of Standards andTechnology, which is also funding several otherprojects that develop or implement novel informa-tion technologies for use in the health care sys-tem.91

Integration of the various technologies andstandards into working systems is also one focusof the High-Performance Computing and Com-munications (HPCC) program. This multiagencyfederal effort was initiated by the President’s Of-fice of Science and Technology Policy during theBush Administration and expanded by legislationintroduced by then-Senator Albert Gore. The Na-tional Science Foundation (NSF), National Aero-nautics and Space Administration (NASA),National Institutes of Health (NIH), and otheragencies participating in the HPCC program sup-port the development of the underlying technolo-gies essential for telemedicine and other healthcare applications of the National Information In-frastructure, including the National Research andEducation Network (NREN), pilot implementa-tions of advanced information technologies inhealth care settings, and supercomputer centers.92

Recent HPCC grants through NLM have fundedresearch leading to implementation of computer-based patient records in the Indianapolis metro-

politan area,93 creation of a statewide digitalnetwork to support telemedicine and rural healthcare providers in Iowa,94 development of ad-vanced computer simulations of human anatomicstructure to support surgical planning and medicaleducation, and numerous other projects.

Population-based public health services mayalso benefit from the development of standardsand technologies that will enable health informa-tion to flow freely. Advanced techniques forknowledge discovery in databases may be appliedto help automate the identification of public healththreats, such as the recent Hantavirus outbreakthat was identified through a medical examinersurveillance database maintained by the Centersfor Disease Control and Prevention (CDC). Asmall number of grants supporting the develop-ment of public health applications have beenawarded by the National Telecommunications andInformation Administration, and other integrativework is proceeding with support from CDC,AHCPR, the U.S. Public Health Service, and oth-er agencies.

POLICY ISSUES AND OPTIONSThe technologies for collecting, distilling, stor-ing, securing, and communicating data are widelyused throughout American industry. They areused in health care organizations as well, but theirapplication has been limited to scattered islands ofautomation. Despite the incorporation of hightechnology into almost every other aspect of clini-cal practice, information technologies have notbeen fully embraced.

The health care delivery system has severalunique characteristics that discourage the spread

90 The HOST consortium has over 30 corporate and academic partners. It was co-developed in 1994 by the Microelectronics and Computer

Technology Corporation (MCC) and the Computer-based Patient Records Institute.

91 B. Deming, “Launching a High-Profile Automation Mission,” Health Data Management, vol. 3, No. 5, May 1995, pp. 15-19.92 D.A.B. Lindberg and B.L. Humphreys, “The High-Performance Computing and Communications Program, the National Information

Infrastructure, and Health Care,” Journal of the American Medical Informatics Association, vol. 2, No. 3, 1995, pp. 156-159.

93 J.M. Overhage, W.M. Tierney, and C.J. McDonald, “Design and Implementation of the Indianapolis Network for Patient Care and Re-

search,” Bulletin of the Medical Library Association, vol. 83, No. 1, 1995, pp. 48-56.

94 M. Kienzle et al., “Iowa’s National Laboratory for the Study of Rural Telemedicine: A Description of Work in Progress,” Bulletin of the

Medical Library Association, vol. 83, No. 1, 1995, pp. 37-41.


of information technologies. Clinical practice isextremely complex, and despite the efforts ofstandards committees, no unified conceptualmodel exists that is powerful enough to guide thecreation of computer databases that adequatelyrepresent medicine as it is practiced. No consen-sus has emerged on what information should bekept in electronic patient records, how detailed itshould be, or how it should be described and in-dexed.

It is not a lack of appropriate hardware that lim-its or impedes productive computing in healthcare services. Rather, it is a failure to understandthe intricacies of health care delivery as related tocapture and use of medical data, and the ways inwhich they must be manipulated. Hence, what isput into software, and thus the software itself,does not adequately reflect the real needs of healthcare providers or the ways in which they conducttheir activities.95

Experience gained in solving problems in onearea of medical practice may not be applicable toother areas. A clear example of this occurs withdecision support systems. Self-contained, rule-based systems are widely used in well-definedareas such as infection diagnosis and in somemedical equipment, but attempts to extend thescale of decision support to broader areas of medi-cal expertise have been frustrated. This resemblesthe general pattern of medical research: narrowproblems are solved on a local basis. The result isan idiosyncratic vocabulary and nonuniform clin-ical practice. Perhaps medical informatics worksbest at solving a large number of microproblems.If so, efforts should turn toward smoothly inte-grating all the microsolutions.

In addition to the complexity of clinical knowl-edge, the structure of the health care industrydiscourages implementation of information tech-nologies. Providers of health care services areoften isolated in separate corporate entities from

the insurance companies that pay them for theirservices. Providers and payers are further isolatedfrom the medical research community, govern-ment health care agencies, and public healthorganizations. A network of private sector inter-mediaries has formed to facilitate the complicatedrelationships between the various organizations.None of these entities is likely to be willing to col-lect or organize data that saves money or effort forsome other organization, but delivers it no im-mediately useful benefit; systemic savings may beirrelevant in a vertically fractured industry. In ad-dition, many communities have only a few hospi-tals or major insurers. The cooperation necessaryto interconnect medical information within a hori-zontal layer of the health care system may be seenas anticompetitive and subject to antitrust regula-tion, or it may be hindered by organizations thatregard their internal information systems as com-petitive advantages and accumulated patient re-cords as corporate assets.

Information technologies tend to flatten orga-nizations and may not mesh well with the rigidlydefined job roles and hierarchical structure of cur-rent clinical practice. As an example, a patient re-cords system was installed at the University ofVirginia Medical Center that required clinicians toenter medical orders on computers. This had anunexpected effect on the education of fourth-yearmedical students who are often allowed to placeorders for a patient’s care with the approval of aresident physician. With paper records, this hadbeen a simple matter that saved time for the resi-dent and gave satisfying responsibility to the stu-dents: the student drew up a list of potentialorders, consulted the resident, and had the list ap-proved. With computerized order entry, the proc-ess was much more cumbersome. Each order wasissued separately and needed to be approved sepa-rately. This meant either calling a resident multi-ple times to approve individual orders or placing

95 T.L. Lincoln, D.J. Essin, and W.H. Ware, “The Electronic Medical Record: A Challenge for Computer Science To Develop Clinically andSocially Relevant Computer Systems To Coordinate Information for Patient Care and Analysis,” The Information Society, vol. 9, 1995, pp.157-158.


orders in suspension one by one and then findingways to reassemble them for a single consultationwith the resident.96

It might be argued that changes to the design ofthe system, or implementation of a records systemmore carefully tailored to support desired workpatterns, could alleviate this specific problem.Nonetheless, the deeper issue is that completionof every detail of order entry is a new and perhapsunwelcome task for physicians. To some extent,all information systems that deliver informationto a clinician at the point of care also require si-multaneous collection of information by the clini-cian at the point of care. Job descriptions willchange as decisionmaking, authorizing actions,and entering data become more tightly linked:

In contradistinction to the retail sector, whichcan assign relatively inexperienced employeesto data-entry positions [and create competitiveadvantages by capturing data at the point ofsale], the health care sector places the mosthighly trained professional personnel with thegreatest opportunity cost in the data-entryrole.97

Changes in job roles will occur throughout thehealth care system, should information technolo-gies be widely adopted. These changes will beaccompanied by redistributions in health profes-sionals’ time and by shifts in the responsibilitiesand status associated with the various health disci-plines.

Information technologies may have more sub-tle ramifications as well. The widespread adop-tion of integrated information systems willchallenge the legal system. Patients are the con-sumers of health services, and their traditionalprotection against poor-quality care has been theability to file lawsuits against their providers. In-formation technologies are tools for providinghealth care, but they are maintained and employedby a variety of people who may be geographically

separated. Who is responsible if a treatment proto-col recommended by a decision support systemturns out to be injurious? Is it the academicianwho designed the protocol, the reviewers who ap-proved its publication, the insurance companythat insisted it be implemented, the hospital boardthat approved its use, the interface designer whofailed to provide contextual information thatcould have contraindicated its use, or the primaryphysician who employed the protocol, but mayhave had no knowledge of its deficiencies? And ifno one can be held directly accountable, what al-ternative system of quality control must be de-signed to replace the current legal remedies?Information technologies diffuse responsibility,and changes in the hierarchical way that medicalcare is practiced may be necessary before they arefully embraced.

Finally, information technologies are expen-sive to implement and their benefits may be diffi-cult to measure directly, even when all parties arehappy with the results. This may help delay theirdeployment in an industry whose sophisticatedtechnological base is seen by some to be a drivingforce in making health care more expensive.

❚ Opportunities and ChallengesGiven these obstacles, installation and efficientutilization of information technologies in healthcare will continue to be incremental and difficult.However, there are a number of reasons why Con-gress may wish to actively support this process.

First, implementation of information technolo-gies could lead to reductions in federal healthcare expenditures. The federal government is amajor purchaser of health care through Medicareand Medicaid, and a major integrated provider andpayer through its health care programs for militarypersonnel, veterans, and Native Americans.While individual private sector organizations par-

96 T.A. Massaro, “Introducing Physician Order Entry at a Major Academic Medical Center: II. Impact on Medical Education,” Academic

Medicine, vol. 68, No. 1, 1993, pp. 25-30.

97 T.A. Massaro, “Introducing Physician Order Entry at a Major Academic Medical Center: I. Impact on Organizational Culture and Behav-

ior,” Academic Medicine, vol. 68, No. 1, 1993, pp. 20-25.


ticipating in health care delivery may find it diffi-cult to realize financial benefits from systemicchanges, the federal government is ideally si-tuated to recoup whatever costs might be incurredin encouraging adoption of information technolo-gies at all levels of health care delivery by substan-tially reducing its own health care costs.Researchers and others have suggested that multi-billion-dollar annual savings might be possiblewith increased use of information technologies inhealth care. Chapter 3 discusses these projectionsfor administrative savings.

Information technologies may also foster com-petition in the health care industry. Chapter 4discusses ways that advanced information tech-nologies can be used to evaluate the effectivenessof health care procedures and the efficiency ofhealth care organizations. Although these tech-niques for quality assessment are highly problem-atic, they may represent an unprecedented metricby which organizations and practices can becompared and contrasted, thereby enabling con-sumers and managers to make more informedchoices concerning their health care.

Implementation of information technologiesmay help increase access to health care throughprivate sector activities. Chapter 5 discusses waysthat information technologies may allow healthcare providers to extend their reach in the commu-nities they serve through telemedicine or othermeans for electronic delivery of services. In addi-tion, new technologies may help decentralizehealth care by increasing the flow of useful in-formation to primary care doctors so that morepeople can have access to state-of-the-art healthcare without resorting to hospital or emergencyroom care. This consideration is especially impor-tant in rural communities and inner-city commu-nities where the viability of large health careinstitutions is uncertain.

Finally, information technologies could lead tosystemic changes and opportunities that will en-

able the American health care system to betterserve its citizens through more convenient andperhaps less expensive delivery of health services.Some of the benefits and conveniences (as well assome of the drawbacks) of health care enhancedby information technology were envisioned in thefictional scenario at the beginning of this chapter.Many others will only become apparent once abroad information infrastructure is in place. Everynew tool contains embedded ideas that go beyondthe function of the tool itself.98 When personalcomputers were developed, there was little indica-tion or intention that they would rapidly developinto tools for individuals to publish and access in-formation across the globe; the federal govern-ment played an important role in that developmentthrough its support of the development of the In-ternet’s predecessors.

There are indications that similar dynamicswill emerge as the health information infrastruc-ture continues to evolve. One example of this ap-pears in the area of pharmaceuticals. The volumeof pharmacy claims is much greater than the num-ber of claims for clinical procedures, and pharma-cy claims are also much simpler to process thanother claims. Two crucial enabling standards ex-ist: the National Council of Prescription DrugPharmacies (NCPDP) has developed a widely ac-cepted standard for communication between com-munity pharmacies and claims processors, and theFDA has defined the National Drug Code thatspecifies a unique code for each drug. As a result,pharmacy claims were one of the earliest areas tobe computerized. Today, over 90 percent of com-munity pharmacies are connected online to at leastone third-party pharmaceutical claims proces-sor.99 This connectivity led to the expected ad-ministrative savings due to elimination ofpaperwork and automation of eligibility verifica-tion and inventory replenishment, but it also hadthe relatively unforeseen benefit of making avail-

98 N. Postman, Amusing Ourselves to Death: Public Discourse in the Age of Show Business (New York, NY: Viking Press, 1985), p. 30.99 C.J. McDonald, “News on U.S. Health Informatics Standards” (letter), M.D. Computing, vol. 12, No. 3, 1995, pp. 180-186.


able the information necessary for management ofprescription patterns for cost-control purposes.

An industry of pharmaceutical benefit manag-ers (PBMs) has developed that manages drugbenefit plans for insurers and employers. Informa-tion technologies made it possible for these PBMsto aggressively manage the usage patterns forpharmaceuticals and directly compare costs fordrugs with similar therapeutic value. This has ledto savings in pharmacy expenditures for manyproviders using PBMs, although some studieshave shown that savings are sometimes offset byincreased use of other, more expensive servicessuch as hospital outpatient, inpatient, or emergen-cy services.100 Information technologies have ledto significant changes in the distribution and pur-chasing of pharmaceuticals, such as the develop-ment of formularies, or lists of preferred drugs,and the widespread use of generic drugs and drugsdiscounted by manufacturers. The implementa-tion of information systems has had a broadimpact even on pharmaceutical research and de-velopment because it has encouraged develop-ment of novel drugs and generic drugs, but made itless attractive to develop new entries for drugcategories with numerous existing products.101

Computerization of pharmacy transactions pre-sents an opportunity for addressing more compre-hensive health maintenance issues, such as patientcompliance with drug therapies, because physi-cians could be informed when their patients fail torenew prescriptions or when they obtain addition-al drugs prescribed by other caregivers. Freelyflowing health information may have large im-plications for both the creativity and the competi-tiveness of the health care industry.

❚ Policy OptionsIf Congress wishes to support and affect the diffu-sion of information technology in health care set-tings, it could consider a number of options.

OPTION 1: � ��

Congress may wish to participate in or monitorefforts to set standards for implementation of in-formation technologies in the health care system.Congress could:

� support the development and adoption of con-sensus standards for electronic messaging andclinical coding. This could be achieved by di-recting agencies to supply personnel to activelyparticipate in standards-setting meetings and todevelop aggressive timetables for governmentimplementations of consensus standards. Taxcredits could also be extended to encourage thepurchase of information systems that imple-ment consensus standards.

� support the development of coding systems andnomenclatures necessary for communicatingthe content of patient records. This could bedone by continuing to fund the development ofthe Unified Medical Language System and re-lated efforts at the National Library of Medi-cine.

� ensure that technical standards for the contentof patient records and for minimum levels ofprivacy and confidentiality meet privacy policygoals. This mission could be delegated to: 1) aspecial task force made up of technology, priva-cy, and health information experts; 2) a com-mittee charged with an ongoing review of

100 C.M. Kozma et al., PharmacoEconomics, vol. 4, 1993, pp. 92-103, 187-202.101 Judith L. Wagner, Senior Associate, Health Program, Office of Technology Assessment, testimony presented before the Committee on

Finance, U.S. Senate, hearing on Long-Term Care and Drug Benefits Under Health Care Reform, Apr. 19, 1994.


health information privacy issues;102 or 3) anexisting committee, such as the Health In-formation and Applications Working Group ofthe Information Infrastructure Task Force(IITF).


��

Most of the technologies discussed in thischapter have been developed through corporate oracademic research that was not connected directlyto health applications. As a result, some areas,such as human-computer interface design for usein medical contexts, are not well developed andmay pose difficult problems in the implementa-tion of integrated systems. Congress could en-courage research into these areas by creatingfocused programs administered by the NationalScience Foundation, the National Institutes ofHealth, or other agencies providing traditionalpeer-reviewed research grants. In addition, Con-gress could support research into large-scale im-plementation of information technologies inhealth care settings through pilot programs andtesting centers.


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This coordination could be achieved throughexisting agencies and committees or through theestablishment of a special committee or commis-sion. In particular, the relevant bodies might becharged to:� establish procedures for expediting approval

and distribution of medical software. Faultysoftware is as dangerous and worthy of regula-tion as poorly designed medical hardware, butsoftware has the unique feature that it can be de-veloped incrementally and distributed elec-tronically.

� establish mechanisms (or support similar pri-vate sector efforts) for reviewing and dissemi-nating clinical protocols.103

� advise Congress on specific needs of the clini-cal community with respect to legislation es-tablishing regulations and policies pertinent toinformation technologies. Current issues thatfall under this rubric are liability reform andtelecommunications deregulation legislation.

� establish policies consistent with privacypolicy goals for implementation of uniform pa-tient and provider identifiers for use in federalagencies.

102 U.S. Congress, Office of Technology Assessment, op. cit., footnote 43, p. 20.103 For further discussion, see chapter 4.

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