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Chapter 6 Information Technology and the Health of an Aging Population Introduction The “information revolution” has profoundly af- fected business and commerce, recreation, edu- cation, security, and social interaction. Until very recently, this revolution has had little apparent effect on most of our health institutions and prac- tices. Yet information technology has changed the entire health system and is a distinctive ele- ment in all fields of health. These fields and con- tributions include: medical education—access to biomedical data bases; public health and biomedical research-com- puter modeling and statistical analysis; health care delivery-construction of diagno- sis-related groups; patient care —access to computer-assisted diag- nostic systems; information management—medical informa- tion systems; occupational health—epidemiological analy- ses; and patient education-computerized health risk appraisal instruments. Although the rate at which information technol- ogy has been incorporated into the health care system has been less rapid than predicted 10 or 20 years ago, it is now clear that it will be an in- creasingly important part of this system at all levels. 1A previous OTA report has defined information technology to include “communications systems such as direct broadcast satel- lite, two-way interactive cable, low-power broadcasting, computers (including personal computers and the new hand-held computers), and television (including video disks and vrideo tape cassettes)” (62). Because of space limitations and the importance of the computer as an access tool to health information, this report more narrowly defines information technology as ‘(the application of computers and telecommunication systems to the creation, storage, manipulation, and dissemination of information. ” Relatively little attention has been devoted to applying information technology to the specific health needs of the older population, which stands to benefit significantly from its various ap- plications. Information technology can enhance functions diminished by the aging process in the “healthy” elderly, improve health care for those with acute and chronic medical problems, and en- rich the health care services that traditional health care institutions and professionals provide. It can also disseminate information on maintaining and improving health and on the availability of serv- ices in new environments such as home and com- munity centers. Because there are as yet few examples of the application of information technology to the health needs of the older population, this chapter focuses on the potential use of information tech- nology. The contribution of information technol- ogy to specific health fields, such as patient care and public health, can be extended to their geron- tological components. Technological limitations will be overcome in time. The scarcity of current information technology specific to the elderly underscores another focus of this chapter—the future elderly. There are profound differences in responsiveness to any technology, including in- formation technology, depending on age. In 10 to 20 years, the elderly are likely to have a com- pletely different view of information technology than their counterparts have today. The differ- ence will be even more dramatic when the “com- puter generation” becomes eligible for Medicare, In this context, it is important to recognize the heterogeneity of the older population. Older Amer- icans vary widely in such areas as financial status, health status, and levels of enthusiasm, Many old- er people look upon computers as another of life’s opportunities and challenges (33), while others 159

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Chapter 6

Information Technology and theHealth of an Aging Population

Introduction

The “information revolution” has profoundly af-fected business and commerce, recreation, edu-cation, security, and social interaction. Until veryrecently, this revolution has had little apparenteffect on most of our health institutions and prac-tices. Yet information technology has changedthe entire health system and is a distinctive ele-ment in all fields of health. These fields and con-tributions include:

medical education—access to biomedical databases;public health and biomedical research-com-puter modeling and statistical analysis;health care delivery-construction of diagno-sis-related groups;patient care —access to computer-assisted diag-nostic systems;information management—medical informa-tion systems;occupational health—epidemiological analy-ses; andpatient education-computerized health riskappraisal instruments.

Although the rate at which information technol-ogy has been incorporated into the health caresystem has been less rapid than predicted 10 or20 years ago, it is now clear that it will be an in-creasingly important part of this system at alllevels.

1A previous OTA report has defined information technology toinclude “communications systems such as direct broadcast satel-lite, two-way interactive cable, low-power broadcasting, computers(including personal computers and the new hand-held computers),and television (including video disks and vrideo tape cassettes)” (62).Because of space limitations and the importance of the computer

as an access tool to health information, this report more narrowlydefines information technology as ‘(the application of computers andtelecommunication systems to the creation, storage, manipulation,and dissemination of information. ”

Relatively little attention has been devoted toapplying information technology to the specifichealth needs of the older population, whichstands to benefit significantly from its various ap-plications. Information technology can enhancefunctions diminished by the aging process in the“healthy” elderly, improve health care for thosewith acute and chronic medical problems, and en-rich the health care services that traditional healthcare institutions and professionals provide. It canalso disseminate information on maintaining andimproving health and on the availability of serv-ices in new environments such as home and com-munity centers.

Because there are as yet few examples of theapplication of information technology to thehealth needs of the older population, this chapterfocuses on the potential use of information tech-nology. The contribution of information technol-ogy to specific health fields, such as patient careand public health, can be extended to their geron-tological components. Technological limitationswill be overcome in time. The scarcity of currentinformation technology specific to the elderlyunderscores another focus of this chapter—thefuture elderly. There are profound differencesin responsiveness to any technology, including in-formation technology, depending on age. In 10to 20 years, the elderly are likely to have a com-pletely different view of information technologythan their counterparts have today. The differ-ence will be even more dramatic when the “com-puter generation” becomes eligible for Medicare,

In this context, it is important to recognize theheterogeneity of the older population. Older Amer-icans vary widely in such areas as financial status,health status, and levels of enthusiasm, Many old-er people look upon computers as another of life’sopportunities and challenges (33), while others

159

160 ● Technology and Aging in America

find it difficult to adapt to the lifestyle changesthey can bring.

This chapter restricts the definition of informa-tion technology to computers and telecommunica-tions, and focuses on information technology asused by elderly individuals for their health care,either alone or, most often, in conjunction witha physician and other health professionals.

Information technology can be used both topromote preventive behaviors and to help man-age chronic conditions. Discussion of its role inthe health of America’s elderly is important fora number of reasons. The use of information tech-nology by the patient for health purposes has re-ceived minimal attention to date, although a largebody of literature, including reviews, has lookedat information technology in terms of other healthfields, albeit without an age-related focus. OTAhas produced two such publications, ComputerTechnology in Medicated Education and Assessment(64) and Policy Implications of Medical Informa-tion Systems (65).

As the U.S. population ages, more people willneed assistance in functioning, particularly athome. The number of elderly people confined tobed, barring unforeseen changes in disease pat-terns, is expected to rise from 458,000 in 1977to 658,000 in 2000. The number of those needinghelp in getting around their own homes will risefrom 1.9 million to 2.7 million during this period,and a similar increase is expected in numbers ofthose who are limited in carrying out some activ-ities of daily living (19). Some 2.8 million elderlynow need the help of someone else to carry outone or more of their daily activities (70). Whenadapted to the specific needs of the elderly, in-

formation technology can be a primary sourceof such assistance.

The growth of the elderly population will in-tensify demands on the U.S. health care system,producing significant increases in hospitalization,the use of hospital-based services, and nursinghome care (19). By directly assisting with homehealth care and providing access to informationconcerning care for the elderly, either at homeor on an ambulatory basis, information technol-ogy can reduce today’s heavy reliance on high-cost institutional services.

Information technology is expected to increasethe role of the elderly in their own care by im-proving their access to health information andservices. Such technology will be used at home,in physicians’ offices, clinics, or in hospitals bythe elderly, either alone or with the assistance ofothers, including health professionals. One formof information technology, networking,z has thepotential to greatly improve their social interac-tion, mental health, and access to health and otherinformation.

This chapter discusses what is known about in-formation technology and its use by the elderlyfor health purposes, including the cost of provid-ing the technology. Two major factors underliesuch use by the elderly—their ability to use in-formation technology and the extent to whichthey participate in their health care.

‘Networking (computer networking) is the transmission of dataeither to human users or to other computers through connectionsthat link a telecommunications system. In this way, computers cantransmit data throughout the Nation and the world, sharing workand data among groups of linked computers.

The elderly’s ability to use information technology

The ability to use information technology suchas the computer varies considerably with theolder individual. Those with active minds arelikely to relish the acquisition of new knowledge:

a computer club in Menlo Park, CA, teaches elder-ly members to program computers as well as tooperate them (33). The Elderhostel program atReed College, which is limited to persons over 62.

Ch. 6—information Technology and the Health of an Aging Population ● 161

offers a hands-on introduction to personal com-puters as one of its summer residential academ-ic programs for older adults (49).

Even the less adventurous older person maywelcome operating a computer for health pur-poses. The level of computer literacy needed toobtain health information need not be high, andthe older individual often has assistance; in a com-munity setting, other people are usually availableto help. Home use could be facilitated by a familymember, neighbor, or a paid or voluntary visi-tor. Difficulties with independent use of the newtechnologies may thus be limited to a small seg-ment of the elderly population. Although morethan 60 percent of those over 85 have major lim-itations in activity, this proportion is lower atyounger ages. The size of this group is furtherreduced by the fact that with the exception ofvisual, neurological, and muscular problems, mostof the limitations of those over 85 generally wouldnot constrain their use of a computer terminal.

There has been little study of the ability of old-er individuals to use computers in general andstill less about their ability to use computers forhealth care. Available evidence indicates thatsome elderly people enjoy programming and ap-plications software, such as spreadsheets, andothers enjoy recreational computer games andcommunicating by means of computers adaptedto their capabilities. .

A 1980 study of computer communication andthe elderly found them highly receptive to usingthe computer and appreciative of the control thatit afforded them. Interactive communication withother users was preferred over computer gamesby the subjects, who were residents of an urbanretirement hotel. Their favorite game was highlyinteractive and simulated personal communica-tion. The system required a number of modifica-tions for the older users, including a large displayscreen and large characters on the keyboard. Thepresence of a trained computer demonstrator ina small group setting during the initial stagesfacilitated the learning process. The researchersconcluded that additional modifications to thehardware, such as color-coded keys, would in-crease user satisfaction (18).

A more recent examination of computer use bythe elderly was conducted during a series ofworkshops held in 1983 in Washington, DC, andsurrounding suburban areas (38). A total of 200individuals, ranging in age from 60 to 95, attendedat least one of 14 workshops. The study popula-tion was recruited from educational programsfor the elderly sponsored by churches, nursinghomes, and recreational centers. The responsewas extraordinarily enthusiastic. To the surpriseof the researchers, these older computer usersobtained the greatest satisfaction from the pro-gramming portion of the workshop. They wereapt learners and had the patience required forthe task. The participants also enjoyed applica-tions software, such as spreadsheets, but werenot interested in most computer games. The study

162 ● Technology and Aging in America

indicates that at least one segment of the elderlypopulation—those who are active and enthusias-tic—are more than ready for the computer age.

Another study found that the “frail elderly” canalso benefit from information technology. A studyof 50 elderly nursing home residents, whoseaverage age was 85 and who had moderate men-tal and physical impairments, found that thesefrail elderly were able to participate in computergames that had been especially adapted for them.Adaptations included slowing down the game sothat residents with such handicaps as impairedvision or hearing, tremors, or hemiplegia couldenjoy winning. Most of those who were asked toparticipate were willing and eager to try the com-puter games; all were willing to try them a sec-ond time. The study points out that visual sym-bols in video games for the elderly must be largeand well defined and auditory clues distinct andclear, and that these can be used to exercise andimprove memory, enhance hand and eye coordi-nation, and increase ability to concentrate on atask (77).

Although most of today’s elderly, or, for thatmatter, most of today’s middle-aged, have hadlittle experience with computers, the evidence,though scant, indicates that they are receptive tousing the new technology, either “as is” or whentailored to their needs, The elderly of the futureare likely to be more open to using computersbecause of exposure to them throughout theirlifetimes.

The development of new computer and com-munications technologies for those who are func-tionally limited is taking place at an astonishinglyrapid pace. Computers incorporating features tocounteract eyestrain or more serious vision prob-lems are now available commercially. Oversizedvideo displays are relatively inexpensive, but key-boards with large keys are usually custom builtand costly (50). Other approaches include enlarg-ing the letters on present keyboards or color-coding letters when only a few input commandsare needed.

Display interaction-the use of light pens to ob-tain information from a computer—is potentiallyuseful for elderly individuals who find it difficultto use a keyboard. The light pen, used in conjunc-tion with a softwaredriven menu that appearson the screen, is pointed at the item of interestin the menu, which is then displayed on thescreen. Even severely functionally limited elderlypeople can make contact with a computer by uti-lizing a sophisticated light pen that need not makephysical contact with the screen in order to acti-vate the computer. The pen is under developmentfor those handicapped by high-level spinal cordinjuries and cerebral palsy, or for amputees,among others (28).

Another substitute for a keyboard is the touch-sensitive terminal. The user simply touches a sen-sitized television screen’s computer-generatedmenu to obtain audio and visual information.Hewlett-Packard is marketing a touch-sensitivesystem, Bell Laboratories has installed one at Ep-cot Center for use as an information system byvisitors, and Boston’s Sheraton Hotel uses one toprovide information to its guests on in-hotel serv-ices and activities. Many homes are expected tohave them by the mid-1980s.

Voice-activated systems that enter data and re-ceive output on microcomputers are rapidly im-proving in both price and performance, withaccurate representation of speech likely by the1990s (62). Although the capability of current sys-tems to recognize speech is limited, computerscan be programmed to recognize a specific voiceand follow simple commands.

Another new technique, the transparent accessapproach, is being used to give handicapped peo-ple access to standard hardware and softwareprograms (73). The approach allows a specializedmodular design of input and output devices forthe handicapped but gives access to software andhardware designed for the general public.

Ch. 6—information Technology and the Health of an Aging Population ● 163

The elderly and self-care

The use of information technology for healthpurposes by older individuals is also bounded bythe extent of their involvement in their healthcare, either through selfware or through self-helpgroups. About 75 percent of all health care is esti-mated to be self-care (41), which substantiallyeases pressures on the health care system.

Self-care and self-help, as information-basedhealth care activities, are becoming increasinglyrecognized as legitimate sources of care in theUnited States (21). Although definitions of theseconcepts vary, self-care can be generally definedas ‘(actions that we as individuals perform on be-half of our own, our family’s, or our neighbor’swell-being” (72).

An individual’s interest in being in control ofhis or her own health care is often consideredto be the basis of self-care. This concept can beapplied to all levels of health care, including careprovided through the use of high technology (40).It also applies to care taken in consultation withhealth professionals; this application has receivedthe greatest degree of approval from health pro-fessionals and appears to be the most appropri-ate for an elderly population.

Self-help groups are ‘(clusters of persons whoshare a common condition, and who come togeth-er to offer one another the benefit of their ex-perience and mutual support” (72). Broadly de-fined, these groups may total several hundredthousand in the united States (37). A recent in-ventory which used a more restrictive definitionidentified more than 2,000 U.S. programs offer-ing medical self-care instruction (21).

Self -care encompasses a broad variety of activ-ities, ranging from: 1) daily health practices, suchas brushing teeth; to 2) increasing one’s knowl-edge about health through such sources as mag-azines, pamphlets, and health fairs, and actingupon the information received; to 3) assumingtasks traditionally found in a health professional’srealm of practice. This last mode of self% are usu-ally requires formal training in which health skills,such as measuring blood pressure and heart rate,are learned (15).

The delegation to patients of certain tasks usu-ally performed by professional caregivers haslong been routine. Diabetics of all ages test theirurine and give themselves insulin injections; per-sons with angina medicate themselves with nitro-glycerin. Physicians and the Federal Governmentencourage women to undertake periodic self-ex-aminations for breast cancer (66). Patients under-going continuous ambulatory peritoneal dialysisare directly involved in their treatment at home(60). Health education programs, usually initiatedby consumers, disseminate a wide variety of skills,such as showing parents how to obtain throat cul-tures from their children, and teaching womenhow to take a pap smear or do a pelvic exam.Computer and communications technologies areexpected to play an increasingly important rolein enhancing the ability of people of all ages toperform tasks traditionally done by professionals.

Although self-care and self-help programs af-ford wide opportunities for improving generalhealth, many serious issues remain unresolved.These include questions on the degree of com-mercial involvement in the programs and theextent of professional involvement and support.Participants may feel that there is too much pro-fessional input into some programs; physiciansare often concerned about the lack of a signifi-cant professional component (15). Additionalissues include the political implications of certainprograms, and problems of evaluating the effec-tiveness of any program in improving health (21).

Few self-help programs are designed specificallyfor the elderly, but many existing programs ap-pear to be appropriate for their needs. An impor-tant factor in the growth of self-help groups hasbeen the shift in disease patterns from acute tochronic illness. Chronic disease requires greaterreliance on the individual, who must actively andcontinuously modify his or her lifestyle in orderto cope with the burden imposed by the disease.Self-help groups are singularly suited to the careof chronic diseases, and many such groups (e.g.,the Reach for Recovery Program of the Ameri-can Cancer Society and the Cardiac RehabilitationGroup of the American Heart Association) have

I&# . Technology and Aging in America

been established, largely as a result of privatefunding. Although the prevalence of chronic dis-ease among the elderly is high, few organizationshave as yet “taken cognizance of the special needsof the elderly” (15).

Self-care is also well suited to health promotionand disease prevention in terms of health risk-taking behavior. Selfware education can reducethe probability of disease, disability, or prematuredeath from a number of illnesses in which lifestylehas been shown to play a role. The unique cir-cumstances of the elderly make it essential thatself-care education be structured to accommodatetheir specific requirements and expectations, yetlittle has been accomplished in this area.

Preliminary estimates from a large-scale effortto identify self-care and self-help programs in theUnited States found at least 25 self-care programsspecifically focusing on training or activities forthe elderly. Many other programs for the elderlyinclude self-care as part of the curriculum. Theprograms vary in sponsorship and setting, targetgroup, method of implementation, type and sizeof staff, and goals and activities (21). Data on theuse of information technology in these programsare not yet available (20).

Futurists contend that the use of computers andtelecommunications will promote a change awayfrom specialist care to self-care (43,56). At thesame time, enhanced interest by consumers inself-care and their greater awareness of healthand the value of health information will be im-portant factors in their decisions to use informa-tion technology for health purposes.

The Federal Government has played a relativelyminor role in promoting self-care and self-helpamong the older population. The National Insti-tute on Aging (NIA) published an excellent pam-phlet on self-care and self-help for the elderly in1980 (72), and both the National Institute of Men-tal Health and NIA have provided grants to trainparaprofessionals to help organize self-helpgroups among older people.

Also NIA recently began the funding of researchinto the nature of older people’s behaviors andattitudes (68) in using three levels of health care.The emphasis will be on self-care and informalcare and their relevance to health and disease inolder people, regardless of whether the behaviorshave in fact been found by epidemiological studiesto be “risk behaviors.”

NIA has also begun accepting proposals underthe Small Business Innovation Development Actfor self-care research projects for the elderly. Theprojects are aimed at increasing the self-sufficien-cy and sense of well-being of older individuals byenabling them to gain confidence in their abilityto prevent and manage many of their health con-ditions. One project would develop a blood pres-sure self-care modality based on systematic train-ing and education in dietary, exercise, andrelaxation techniques. participants would be com-pared in their ability to control or modify theirblood pressure with their counterparts in a con-ventional medication program (Grant Applicationto the Small Business Innovation Program, 8/83).

Information technology for health purposes

Computer-assisted health instruction

The use of computer-assisted health instructionis a logical extension of self-care/self-help. Thegrowing use of information technologies for edu-cating the public about maintaining health, andpreventing or treating disease, is rapidly increas-ing the number of software programs on healtheducation and management-diet, exercise, drug

interactions, etc.—that can be run on a home com-puter (8).

The relevance of this technological phenome-non for use by and for the elderly has not yetbeen widely recognized in either the private orpublic sector, however. The use of informationtechnologies, particularly the microcomputer,could help the elderly maintain independent liv-

Ch. 6—Inforrnation Technology and the Hea/th of an Aging Population ● 165

ing, and is likely to be particularly effective whenused in conjunction with physicians and otherhealth care providers.

Current efforts to develop such technology spe-cifically for use by the elderly are hampered bylack of interest and lack of funding, but a fewprojects are underway. A specialty group associ-ated with the American Association of MedicalSystems and Informatics, for example, has a spe-cific interest in health assessment of the elderlyand automated systems for this age group. Theirfocus is on information systems support for olderAmericans, with an emphasis on health promo-tion and disease prevention, and on developinga computer-assisted personal health managementsystem for promoting the concept of wellness ofthe elderly (12).

Although very little computer-assisted softwarehealth instruction material is being developed spe-cifically for the older population, health softwareis being produced by all sectors, including the for-profit, not-for-profit, not-for-profit with for-profitsponsorship, and by firms or academic institu-tions with a wide variety of expertise. A relativelylarge number of such products has been devel-oped for mainframe computers, and the numberof such programs for microcomputers is begin-ning to grow. The rapid expansion of personalcomputer capabilities has catalyzed the develop-ment of software packages to the extent that theOffice of Disease Prevention and Health Promo-tion of the Public Health Service publishes a listof health promotion software for health educa-tors, other health professionals, and individualsinterested in developing good health habits. Top-ics include basic living skills, general health in-formation, health risk appraisals, stress manage-ment, and nutrition and diet (70). Most of thesoftware programs, which are not evaluated, aremarketed by for-profit firms and few are inex-pensive. The issue of costs and individual applica-tion of information technology, including soft-ware, is discussed later in this chapters

As in any new product area, problems abound.The field is diverse and unsettled. In some cases,

3A computer monthly has also published an article listing a num-ber of commercially available nutrition, diet, and fitness softwareprograms (23).

programs are developed by transient “entrepre-neurs” who lack subject knowledge and are oftenforced out of the market. A large number of col-leges and universities have developed health in-struction materials and are marketing or planningto market their products. Most available softwareprograms have not been evaluated, but the seri-ous issue of establishing evaluation criteria is be-ginning to be addressed (32).

TYPES OF INSTRUCTIONAL PRODUCTS,DEVELOPERS, PRODUCERS, AND SETTINGS

Private sector health software programs varywidely in both content and price—from nutrition-al programs that cost as much as $700 (69) toweight control and nutrition programs that helpusers balance meals and create weekly menus for

$39.95 (55). Diabetics, for example, can purchase$100 software programs that focus on their dailyfluctuations of blood sugar and insulin.

In the nonprofit sector, the Kellogg Foundationis funding the development of health educationand promotion software for use by adolescentsand their families, primarily in clinic settings.Topics include alcohol and drug abuse, stressmanagement, smoking, diet and exercise, humansexuality, and family communications (10). Theprogram is being systematically developed, testedwith control groups, and evaluated; a preliminaryreport on its effect on the health knowledge, at-titudes, and behaviors of adolescents is scheduledfor early 1985.

Manufacturers of the Apple computer havesponsored the development of a number of healthinformation programs at Ohio State university.When one such program, “Kardia,” which de-scribes risk factors for heart attack, was assessedby patients in the waiting room of a family prac-tice clinic, 95 percent found it acceptable. patientshad to access the program and interact with thematerial presented; 91 percent said that it wasboth helpful in providing an understanding ofhealth and very easy to use (17).

A software package developed at the AbbottNorthwestern/Sister Kenny Institute, in cooper-ation with a firm with expertise in microcomputercourseware technology and educational method-ology, illustrates how information technology can

166 ● Technology and Aging in America

be adapted to the needs of a particular popula-tion, in this case hospital patients with low backpain. The Institute is a major medical center thatis both an acute care facility and a rehabilitationcenter; a considerable proportion of its patientssuffer acute and chronic low back pain. The soft-ware takes the physical status, learning readiness,and motivation of the patient, and the resourcesof the health care facility into account. The micro-computer is accessible to patients at all hours, sothat patients can use it when they are not in pain,and is portable so that the keyboard can be usedeasily from a wheelchair or at bedside. Segmentsof the course are short to accommodate to thepatient’s comfort level and attention span. Uponleaving the hospital, the patient better under-stands the problem and has received instructionfor lifestyle adaptations to protect himself fromfurther injury. The courseware is currently be-ing marketed through the Institute and a com-puter consulting firm (16).

A computer-based education program for pa-tients with rheumatoid arthritis, written at theUniversity of Connecticut School of Medicine, isone of the few programs that has an evaluationcomponent (78). The program’s initial evaluationfound that participants demonstrated more pos-itive changes in knowledge, self-reported compli-ance behaviors, and affect than did a controlgroup. The interactive program is stored on amainframe computer located at the university’shealth center, where it can be accessed by tele-phone from terminals located at any site, and iswritten in lesson format. Although the programwas not developed for the elderly, it does makesome provisions for them. A planned softwareprogram on osteoarthritis will have several ac-cess features for older patients, such as a large-type option, a cutout template that is blocked offand color coded for different functions, and, pos-sibly, a speech synthesizer (57).

The use of computers for in-hospital health edu-cation appears ready for major expansion. TheAmerican Telephone & Telegraph Co. (AT&T) isexploring the potential for developing computer-ized health educational materials with Johns Hop-kins Hospital and other facilities. Little detailedinformation is yet available about the project,which is in the planning stage, but it may utilize

video disks, and a software program instructingpatients in post-heart attack management maybedeveloped (51).

Software packages for health hazard/health riskappraisals (HHA/HRA) are also proliferating. TheHHA/HRA is a technique for health promotionin which the user fills out a questionnaire andthen receives information on his or her healthstatus and recommendations for change. The ap-praisal rates the user’s chances of becoming illor dying from selected diseases by comparing self-described health-related behaviors and personalcharacteristics to mortality statistics and epide-miological data (74). The appraisal is designed tomotivate individuals to change their lifestyle andimprove their health (22), but because it gener-ates a statement of probability and not a diagno-sis, it can present problems (26). Many consumerslack the expertise needed to distinguish betweenrisk factors and diagnosis and may not under-stand the information they receive. Thus someresearchers contend that computer-assisted ap-praisals are best when part of a comprehensiveprogram that might include face-to-face interac-tion with health professionals and written ex-planatory materials (47).

Few HHA/HRAs have been developed for theelderly population, although a number of instru-ments are available to health professionals for usein assessing the general functioning of theirelderly patients (36)42). Numerous self-adminis-tered scales have been developed to measure psy-chological conditions in the aged (36), and com-puter games could be devised to measure variousaspects of aging, such as cognition (35).

Because many database and methodologicalproblems are associated with the construction ofhealth risk appraisals, their use is controversial(74). Even when coupled with programs knownto decrease the prevalence of risk indicators, itis not known whether appraisals will in fact yielddividends of healthier, more productive peopleand reduced expenditures related to illness, dis-ability, and premature death (26). As is the casewith many health care technologies now in use,their role and value have yet to be fully evaluated.

There are also unique problems associated withusing health risk appraisal instruments for today’s

.

Chapter 6

Information Technology and theHealth of an Aging Population

Contents

Page

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ~ . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 159The Elderly's Ability to Use information Technology. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 160The Elderly and Self-Care . . . . . . . . . . . . . , . . . . . . . . . . . . . . . . . . . . . . . . , . . . . . . . . . . . . 163Information Technology for Health Purposes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 164

Computer-Assisted Health Instruction. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 164Computer-Assisted Patient-Health Professional interactions . . . . . . . . . . . . . . . . . . . . . . . 167Access to Computer-Assistecl Information and Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 171Federal Activities . . . . . . . . . . . . . . . , . . . . . . . . . . . . . . . , . . . . . . . . . . , . . . . . . . . . . . . 173

Research Needs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 174Conclusions . . . . . . ... , . . . . . . ... , . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 174Congressional Issues and options . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 175Chapter 6 References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 179

Ch. 6—information Technology and the Health of an Aging Population Ž 169

instruction as by a therapist (1), there is also con-cern that some programs may simply delay re-covery in some cases (76).

The elderly, particularly the home-bound elderly,could profit from the availability and accessibilityof computer-assisted mental health instruction.Home computer use could greatly enhance theirability to obtain reliable assistance with psycho-logical problems and anxieties that are often over-looked and untreated. Effective computer-assistedinstruction in the mental health field, as in allhealth fields, will require the guidance of profes-sionals in the development, use, and evaluationof self-help programs.

Information technology can also assist healthprofessionals with the care of the dependentelderly, who are a minority of the over-65 popula-tion, yet use a disproportionate amount of thisage group’s health services. Frail individualswould benefit from the availability of personalhealth software that combines diet, exercise, andstress monitoring. They could establish their ownbiochemical profiles to determine efficacy andsafety of particular drugs for themselves (9), anddevelop diets appropriate for their health main-tenance.

Some members of the older population havemultiple chronic health problems that require ex-tensive care and treatment (70). Some 77 percentof the elderly have annual Medicare reimburse-ments of less than $500, but 8.8 percent haveaverage Medicare payments of more than $3,000(7).

Computer-assisted health care that comple-ments professional care may enable chronicallyill people to remain in their homes when theywish to do so. About 45 percent of the noninstitu-tionalized elderly presently face limitations causedby chronic disease. Although this proportion isnot likely to change dramatically, the total numb-er of those limited by chronic disease is projectedto rise sharply as the over-65 population growsfrom 27 million in 1983 to 35 million in 2000. Theoldest group of elderly—those over 75, who needthe most care—is growing even more rapidly. In1965, 37 percent of Medicare’s elderly enrolleeswere over 75; by 1981, this proportion had risento 41 percent (58).

A number of factors point to an increase in theproportion of the chronically ill population whomay choose home care over institutional care inthe future. An estimated 15 to 20 percent of to-day’s institutionalized elderly could be living athome if home health services were available andreimbursable. Such services are gradually becom-ing reimbursable through a number of fundingsources, such as Title XX of the Social SecurityAct and Title III of the Older Americans Act, Serv-ices are also becoming available as a result of thephenomenal growth in segments of the homehealth care industry. According to the NationalHomecaring Council, the number of homemaker/home health aide service programs has grownfrom 300 in 1972 to more than 5,000 in 1984 (45).

Moreover, advances in medical technology nowallow services to be provided at home that oncerequired an institutional setting (2). Reductionsin size and complexity have made many machinesportable. By the late 1980s, consumers are ex-pected to spend at least half a billion dollars an-nually for electronic devices to be used in thehome for health monitoring and disease preven-tion (9), Use of these devices will be limited, how-ever, by the need for accurate diagnosis of illness,which requires training and knowledge to inter-pret the results of the instrumentation (46). Tele-communication equipment connecting patientsand health professionals will facilitate their in-teraction and enhance the quality of care.

Increases in the supply of U.S. physicians maycounteract the need for computer-assisted pro-fessional care, since one reason for such care isphysicians’ disinterest in making house calls. Gov-ernment estimates indicate an aggregate surplusof physicians by 1990 that will persist into the21st century (71). Nonetheless, the specific serv-ices needed for the homebound elderly may notbe available. These projections also point to ashortage of general psychiatrists by 1990 and anear balance in the numbers of family practition-ers and osteopathic general practitioners at thattime. But the projections did not analyze geriat-rics, nor did they account for geographic varia-

tion in physician-population ratios. Thus, a surfeitof physicians would not ensure adequate num-bers to meet the special needs of either the elderlyin general or the homebound elderly in particular.

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170 . Technology and Aging in America

Among the health information surveys nowavailable at home is “CompuServe, ” which givessubscribers access to a medical “bulletin board”that includes listings of health professionals, andaffords physicians an opportunity to exchange in-formation. Future applications of such technolo-gies to the needs of specific patients, particularlyhomebound patients, are likely to be extensive.Instructions on patient care can be programmedfor use in the home by the patient or a familymember when needed, which may enable homehealth agencies to reduce the number of homevisits by nurses and other health professionals.One exciting application would redefine the term“house call” by connecting homebound patientswith physicians’ offices; physicians and otherhealth professionals would then be able to makeelectronic house calls.

Few of these efforts have been directed at theneeds of the elderly, but research in such fieldsas rehabilitative medicine provides insight into thepotential for using information technology to giveolder individuals special care. Adapting technol-ogies for the elderly can be extremely difficultbecause this population is so heterogeneous, andbecause the introduction of a technology intotheir lives must often be accompanied by an ed-ucational effort to convince the patient of itsutility.

An interactive system of medical monitoring be-tween the patient’s home and the professional’soffice can be designed in a variety of ways. Forexample, the computer periodically calls patientsand prints out routine questions. If the responseis abnormal, unusually slow, or not given, thecomputer notifies the appropriate health profes-sional. In a similar system, “Lifeline,” which is nowoperational, the patient wears a lightweight trans-mitter that is electronically linked to a health careinstitution 24 hours a day. To call for help, theuser presses a button on the transmitter, sendingan electronic signal to the health care institution’scomputer. The computer identifies the user, notesthe time of the signal, and personnel monitoringthe system use the information stored in the com-puter to determine if help is needed. The systemautomatically sends a signal to the computer ifit is not reset twice each day.

Other examples of medical technologies that canbe connected to computers, thereby assistinghealth professionals with patient care, includeanalog signals from both mechanical and electri-cal devices that can be converted to digital signalsfor transmission to health professional computers.If desired, the health professional can transmitinformation back to the patient or directly to thedevice, Future medical technologies may operatedigitally as do products currently in use, such aswatches and bathroom scales, thereby eliminat-ing the need for conversion of signals from analogto digital systems.

“Smart” sensors—those incorporating micro-processors-currently sense and measure bloodpressure, pulse rates, body temperature, and elec-trical activity of the heart, Measurements of otherphysical functions have been developed for usein rehabilitating handicapped patients; those thathave the potential for computer-based process-ing may be applicable for monitoring the healthstatus of segments of the older population. Forexample, a patient with a spinal cord injury whohas returned home from the hospital can be mon-itored for the number of times and length of timehe or she is out of bed by means of a pressure-sensitive ribbon switch located under the mattressand a strip chart recorder (30). A protocol forcomputer-based monitoring of such chronic prob-lems has been developed that would enable a phy-sician to monitor the patient’s movements (54).Periodic measurements of the movements of apartially bed-bound elderly patient would assista physician in evaluating the patient’s progress.

Computer technology can enable hospital-basedapproaches for managing chronic diseases to beexpanded to the home. A study of cirrhotic am-bulatory patients found that they were able tosystematically measure and communicate medi-cally and behaviorally significant information (54).A health aide telephoned the data to a laboratory,where they were entered into a computer termi-nal and analyzed. The method can be used withmany chronically diseased patients, and helps in-volve them in assessing—and potentially manag-ing—their chronic diseases. When adapted for di-rect linkage to a computer and utilized for anelderly population, the rapid processing of data

Ch. 6—information Technology and the Health of an Aging Population ● 171

provided by ambulatory patients from theirhomes can promote continuity of care approach-ing that provided in hospitals.

Various computer and communication technol-ogies can be used within the home setting forhealth purposes without involving consultationwith health professionals. Computers that moni-tor such household functions as turning lights,radios, and televisions off and on, and providewake-up service by voice synthesizers that speakpre-programmed messages (52) could be pro-grammed to remind elderly persons of medica-tion times, instruct them on diet and medical carepractices, and remind them of physician andother health professional visits. Devices could beprogrammed to track medicinal intake and peri-odically dispense medicines. A bedside automatedprogrammable dispensing machine has been de-veloped for use in hospitals (s) that may be adapt-able for use in the home (6).

Access to compute-assistedinformation and care

Information technology is expected to enhancethe independence of the older population, includ-ing the home-bound elderly, but the extent towhich older individuals will have access to com-puter-assisted information and care is conjectural.For example, their current level of access to thetype of information technology known as inter-site networking is not known at present. In inter-site networking, a home or office terminal andmodem are connected to a mainframe by meansof a telephone or cable; the “Lifeline” system andarthritis self-care program are two examples.AT&T has conducted preliminary experiments inproviding health information in a home settingby networking homes to regional mainframes, butas is traditional in the private sector, informationis proprietary and the company has released onlyscanty information on the developmental process.

The number of elderly who have access to ter-minals or microcomputers in the home is notknown, essentially because the age of individualsowning or having access to personal computershas not been determined. Estimates of the pro-jected penetration of U.S. homes by computersvary widely. A 1983 study estimates that approx-

A .

Photo credit: Lifeline Systems, Inc., Watertown, MA

One type of home-based alarm system isdirectly linked with a central computer.

imately one-fourth of U.S. households will havepersonal computers by the late 1980s, and a 1979study by the University of California estimatesthat at least half of the projected 97 millionhouseholds in the United States will have themby the end of the decade (8). A third study ex-pects this proportion to exceed two-thirds (8,39).OTA has calculated that by 1986 there will be al-most 5 million personal computers used in thehome (62). Estimates of the current number ofhome computers in households also vary substan-tially. The Wall Street Journal estimates the num-ber as 4.2 million, the InfoCorp at 5.5 million, andFuture Computing and the Yankee Group, mar-ket research firms, estimate the number as ap-proximately 7.5 million (39).

Although prices for home computers have de-clined steadily, a major constraint to their accessby the older population may be cost. A 1982 re-port on prices of personal computers found arange from several hundred to several thousanddollars (62). Hand-held computers sold for a fewhundred dollars. Although they are deficient ina number of characteristics, such as size of displayarea, hand-held computers could be designed toconnect with other hardware devices and to belinked over a phone line to a larger system in aphysician’s office, clinic, or community orga-nization.

172 • Technology and Aging in America

Prices for personal computers of similar capa-bility are continuing to fall. It is currently possi-ble to purchase a Commodore 64 with a disk driveat a discount store for about $400, which is lessthan the price of most color television sets. A“Home Teller” program initiated by the MadisonNational Bank in Washington, DC, offers an in-stallment purchase plan for the Commodore 64;by maintaining a $1)000 interest-free balance andpaying $15 a month, a customer can access hisor her banking information and own the comput-er in 36 months. The Chemical Bank in New Yorkand California’s Bank of America offer similarplans (4). As soon as the bank customer receivesthe computer, it can be used for other purposes,including health purposes.

There is little consensus on future computerprices. Software programs for personal comput-ers continue to improve and their prices to de-cline, but whether this trend will continue isunclear. Perhaps the greatest unknown at thistime is the future price of telecommunicationservices. The price effects of the breakup ofAT&T have yet to be determined.

Whatever the future costs of computers, soft-ware, and telecommunication services, somemembers of the elderly population will not findthem affordable or attractive, even for health pur-poses. Although income levels vary widely amongthose over 65, the elderly tend to be concentratedat the lower end of the income distribution, asshown in table E-II in appendix E. Nonetheless,income, as but one measurement of monetaryassets, does not indicate total financial worth.Both savings and committed expenditures will in-fluence the purchase of information technology.Many members of the older population own theirown homes and have either paid off their mort-gages or are doing so at low interest rates. Theirhealth expenditures, however, are higher thanthose of any other age group.

Many members of the elderly population willhave access to software programs in libraries orcommunity settings, and those who are still em-ployed are likely to find computers in the work-place. Current estimates by International DataCorp. establish the ratio of computer terminalsto office workers at 1:5; by the end of the nextdecade the ratio is expected to be 1:2.

A major obstacle to accessing computer-assistedinstruction and care is the incompatibility ofequipment. Software programs are usually writ-ten for specific microcomputers. The fact thatthey cannot be transferred between differentmachines, a problem for users of all ages, is par-ticularly acute for those over 65 because of thescarcity of programs for their use.

Older individuals who have functional limita-tions have additional access problems in that theyoften find it difficult TO use computers designedfor the general public. More than 11 million vis-

ually impaired Americans of all ages (most areover 55) find it difficult or impossible to read in-formation on conventional display screens (3).About half of all Americans who have hearing lossin one or both ears are over 55 and are oftenunable to understand spoken messages on the ter-minal or from a computer terminal; many can-not hear the “beeps” some computer programsproduce. Many older individuals whose mobilityis restricted also find it difficult to reach the equip-ment or have trouble with keyboard control.

Awareness of the need for special equipmentfor the handicapped has risen significantly in re-cent years (73). For the most part, specializedequipment to enable handicapped individuals ofall ages to use information technology has notbeen produced by mass market manufacturersbecause the demand for such technology has beendifficult to demonstrate. Available demographicsdo not delineate the true number of elderly indi-viduals with specialized needs because older peo-ple with functional limitations are not accuratelyrepresented in the census or other surveys. Manyof those who have limitations cannot respond tosurveys because of their limitations-e.g., deaf-ness. Of greater importance is the complexity ofpayment arrangements for adaptive computertechnologies. In almost all cases they have notbeen considered health devices by Medicare andMedicaid. The availability of appropriate privateinsurance coverage depends on a number of fac-tors, including employment and State laws.

Until now, specialized equipment has been man-ufactured by “thin” market manufacturers or hasbeen custom-made, and is not inexpensive (11).Advances in the field are so rapid, however, thatit is impossible to forecast the size and configura-

Ch. 6—information Technology and the Health of an Aging Population . 173

tion of the market in even the very near term.For example, only one company manufacturedkey guards in January 1984. By April 1984, therewere seven brands of key guards on the market.

significant developments in alleviating some ofthe problems of the functionally disabled are theimprovements in standardizing the connectionsbetween adaptive devices and commercially avail-able computers and in providing access to stand-ard software programs for those using assistivedevices.

whether it is Government’s role to interveneon behalf of those older persons who would ben-efit from the accessibility to health services thatcomputer and telecommunication services wouldafford is a matter of resource allocation.4 At thistime of Federal financial constraints, Federal re-sources are not sufficient to provide all technol-ogies to all people who need them. Money thatis applied in one area of technology limits thatavailable for other areas. Conversely, it is appro-priate for the Government to assist with provid-ing goods and services that the private sector can-not. important considerations in making decisionsconcerning information technology for the agedinclude:

1. the degree to which encouraging independ-ent living for the elderly is a priority of Fed-eral resource allocation policy,

Z . the cost effectiveness of information technol-ogy, and

3. the extent to which information technologywill encourage independent living for theelderly.

Federal activities

The level of Federal involvement with informa-tion technology and the aged has been minimal.The National Institute on Aging (NIA) of the Na-tional institutes of Health (NIH) has sponsored thedevelopment of information systems in nursinghomes in its teaching nursing home program.OTA has been able to identify several projects that

4A recent OTA report provides a comprehensive view of the Gov-ernment’s role in technology for the handicapped (63).

the Federal Government may sponsor that direct-ly address the use of information technology bythe elderly for health purposes. One project, stillin the planning stage, will investigate the use ofmicrocomputers and computer games to improveelderly people’s mental and social interaction. Itmay be submitted to NIA under the Small Busi-ness Innovation Development Act (public Law 97-219). Under the same program, the NIA has re-ceived a number of proposals for automatic drugdispensing systems that utilize computer tech-nology.

The use of information technology would be ap-propriate for other programs for the elderly nowunder consideration. In planning for a nationalhealth promotion campaign for the aged, the Of-fice of Disease Prevention and Health Promotionof the U.S Public Health Service and the Admin-istration on Aging are sponsoring a project aimedat identifying effective ways to communicatehealth information, particularly on nutrition andfitness, to older people, emphasizing actions thatpromote health and prevent disease. A currentNIA grant and contract solicitation calls for grantapplications for research projects designed toidentify specific modifications of the social envi-ronment, including the home, that may improvethe health of middle-aged and older persons (67).Listed as a possible area of investigation is re-search on technological changes that can be in-troduced into homes to maintain independent liv-ing for frail, older people. In addition, a specialgrant announcement soliciting proposals to dem-onstrate and evaluate the impact of covering pre-vention services in the Medicare program waspublished in the Federal Register on August 12,1983. The announcement calls for studies of Medi-care reimbursement for a package of preventionservices, including health education/promotionservices.

The Federal Government has been involved inother fields that have relevance to informationtechnology for the elderly. For example, the Gov-ernment has played a role in the research, devel-opment, and diffusion of information technologiesfor the handicapped (63). As has been noted, in-formation technology developed for the handi-capped can in many cases be used by the elderly.

174 ● Technology and Aging in America

The Federal Government has also played a part information technology developed to instruct re-in information technology for education in gen- tarded children, such as memory aids, could beera] and for special education (62). Some of the adapted for use by the elderly.

Research needs

To make the most effective use of informationtechnologies (computers and communicationstechnology) for the elderly requires investigatingareas that range from the physical sciences to thesocial sciences. Current research needs include:

The effectiveness of selfware/self-help, healtheducation and the specific techniques of HHA/HRA, and home care in promoting and main-taining health and monitoring health careamong the elderly. Computer-assisted pro-grams in these areas need special attentionwith respect to both development and eval-uation.The economic implications of self-care andself-help.The ability of various subgroups (by age, bygeneral health status, and by disability) withinthe elderly population to use computer andtelecommunications technology.The development of new and adaptation ofcurrent computer and telecommunicationstechnology to the needs of particular sub-groups of the older population, according toage, general health status, and disability.

Conclusions

A major consideration in formulating policiesregarding information technology to be used byan elderly population is matching technologies tousers. “Appropriate technology”s is a Clear need

‘In a previous report, OTA used the term “appropriate technol-ogy” to refer to technology that is developed or adapted in responseto the needs, desires, and capabilities of disabled people and ap-plied appropriately. The same concept of appropriate technologyis used here to refer to appropriate technology for elderly people.It is also recognized, however, that the elderly are an extremelydiverse group that includes many older individuals for whom theremay be no need to adapt the technology used for the general pub-lic (63).

Methods of involving the elderly in the de-velopment and delivery of information tech-nology,Methods of encouraging the developmentand transfer of current and future computerand communications technology to the olderpopulation. Of particular importance areproper interactions between the public andprivate sector to ensure equitable access ofelderly persons to information technology,especially those with functional limitations.Methods of reducing financial barriers (with-in reasonable restraints) to the acquisition ofappropriate information technology by theolder population.The application of artificial intelligence tointeractive computer programs.The evaluation of software programs forsafety, effectiveness, and instructional strat-

egy (discussed further in the CongressionalIssues and Options section at the end of thischapter).

in many cases. Also important are the reactionsof society and its institutions to existing and futuretechnological capabilities and its willingness to as-sume financial responsibility for diffusion of var-ious technologies.

As has been stressed throughout this chapter,society has thus far placed little emphasis on theresearch and development of information tech-nologies specifically for use by the elderly, eitheralone or in conjunction with health professionals.The preceding list of research needs testifies tothe absence of rigorous information. Interest in

Ch. 6—information Technology and the Health of an Aging Population Ž 175

this area, which has been lacking in the field ofinformation science, is now beginning to surface.Professionals who work with the elderly have be-gun to realize the assistance that information tech-nology can afford their clientele. Awareness ofthe potential of information technology in assist-ing with the health of the elderly population, andcooperation among information scientists, geron-tologists, and other pertinent specialists are bothvery much in their infancy.

The information technology that is available hasbeen developed for other populations, such as thegeneral public, the business community, healthcare organizations, or the handicapped. Much ofit can be adapted to fit the needs, desires, andcapabilities of the elderly. Although it is sparse,there is convincing evidence that older people canbenefit from using computers. Indeed, many oftoday’s older individuals are completely comfort-able with the new technology. The elderly of thefuture will find computers much “friendlier,” inboth a technological and a social sense.

Information technology can be used by thoseover 65 for health purposes in two major ways.One is computer-assisted health instruction. Theuse of computer-assisted health instruction forthe population in general is new, and scant at-tention has been paid to developing programs forspecific populations, such as the elderly. Althoughthe market is growing, the number of softwareprograms currently available is very small, andfew have been evaluated. The market is complexin terms of the vendors of such programs. Someprograms are developed and distributed by for-profit firms whose substantive knowledge of the

subject matter or ability to produce a quality prod-uct may be questionable. Other programs are be-ing developed under the aegis of university pro-grams and subsequently marketed. A minuteproportion of such programs specifically addressthe needs of those over 65.

Information technology can also be used to as-sist health professionals in monitoring the careof older adults. Many available and emerging tech-nologies can be adapted for interactive use by theelderly and health professionals. Yet there re-mains too little recognition of this potential use,either by manufacturers of the equipment or bytheir distributors.

Society is on the verge of applying concepts de-veloped in other areas to the needs of the elderly.The time is thus propitious for developing poli-cies that will make a significant contribution tothe research, development, and diffusion of in-formation technology appropriate for use by andfor older individuals. The appropriate utilizationof information technology by the elderly is not,however, inevitable. A key consideration in for-mulating policies regarding information tech-nology to be used by those over 65 is society’scommitment to the use of present and futuretechnological capabilities. Although it is anavowed goal of Federal policy to keep the elderlyout of institutions and promote their independ-ence, there are substantial costs involved in theresearch, development, and diffusion of informa-tion technology for the older U.S. population.These costs need to be evaluated against “help-ing the senior members of society continue asviable participants in its processes” (48).

Congressional issues and options

ISSUE 1: Should Congress assume major re- not require new legislation because sufficient au-sponsibility for assuring the quality thority has already been written into law. Rather,of computer-assisted health instrue desired actions could be stimulated by congest-ion for the elderly? sional interest or oversight.

These policy options are intended to assure the The principal question to be addressed is thequality of computer-assisted health instruction for extent to which the Federal Government shouldthe older population. Most of the alternatives do be involved in activities concerning the quality of

176 ● Technology and Aging in America

computer-assisted health instruction for the elderly.The use of the technology for all age groups, andparticularly the older population, is in a very earlystage of development. It is not yet a viable meansof promoting, maintaining, or monitoring thehealth of the older population. But beneficialhealth-related software programs for this popula-tion can be forthcoming if adequately fostered.Because of the possible physical and financial vul-nerability of those over 65, the quality and cred-ibility of the content of health-related softwareprograms for this age group require attention.

The Government’s role could depend on thetypes of computer-assisted health programs forthe elderly, which vary along a number of param-eters. Of particular relevance for the quality issueare the specificity and uniqueness of a program’scontent, Quality and accuracy of information arenecessary to all computer-assisted health educa-tion, including gener~ instructions on broad sub-jects, such as good health habits, the nutritionalvalue of foods, and HHAs/-lRAs. Quality assumesstill greater significance in software programs thatinstruct individuals on managing specific healthconditions with counseling, drugs, or medical de-vices. Quality is also an essential component ofan individualized software program that instructsa person on the care of his or her particular med-ical problem. Because, however, such programsusually require continuous consultations with andrevisions by a health professional, some aspectsof quality control are informally in place.

Options:1.1: The private sector could assume responsibih”tyfor

the quality of the content of health instructionalsoftware for the elderly.

Although computer-assisted health instructionis not a new technology, there is as yet no for-mal mechanism in the private sector to overseethe safety and effectiveness of the content of soft-ware programs. Computer-assisted health instruc-tion has been used for a number of years for theeducation of health professionals. In the early1970s a number of software programs for thegeneral public appeared on the market, but mostwere of poor quality and did not achieve com-mercial success, Interest in the technology has

resurfaced with the diffusion of microcomputersinto clinics, offices, schools, community centers,and homes. It is conceivable that, if left undis-turbed, market forces might eventually eliminatequality deficient health instructional software pro-grams. But today’s potential market for computer-assisted instruction is large and poorly informed.The rapid diffusion of the microcomputerthroughout society has given millions of people,including older people, access to computer-assisted health instruction that did not exist 10or 15 years ago, As the number of people withaccess to computers soars in the future, the num-ber of users who lack the expertise to properlyevaluate the content of instructional programswill also rise.

Government involvement in generalized de-scriptive programs that do not differ from pub-lished materials would be hard to justify becauseof the protection afforded publications by theFirst Amendment. But reputable developers ofcomputer-assisted health instructioniil material at-tempt to produce programs that do not mimicpublished matter. The nature of the computer al-lows for an interactive exchange between the userand the program, which is rarely possible be-tween the reader and a book or other publica-tion. proficient software developers thus attemptto invoke active user participation in construct-ing their software programs. Whether the Gov-ernment can assume a role with respect to thequality of interactive instructional software pro-grams has not been determined.

A serious issue arises about actions to be takenin cases where incorrect or inexact informationis used in software programs that instruct indi-viduals how to manage mental health problemsand how to use drugs or medical devices to man-age medical conditions. such information may ad-versely affect the health status of the user. Be-cause of its general role of protector of the publicand its specific role of user of and payer for healthtechnology, the Government is concerned withissues of safety and effectiveness. And the Gover-ment has found it necessary to assure the safetyand effectiveness of health technologies, such asdrugs and medical devices, on which the life ordeath of the user may depend.

Ch. 6—information Technology and the Health of an Aging Population ● 177

1.2:

1 .2,a:

Congress could encourage Federal involvementin validating the quality of the content of healthinstructional software for the older population.

Congress could require that the Food and DrugAdministration(FDA) regulate the safety and ef-fectiveness of the content of all health instruc-tional software for the elderly.

The FDA is currently responsible for regulat-ing the safety and effectiveness of all new drugsand certain medical devices before they are mar-keted. There is also legal precedent for the FDAto classify certain types of software as medicaldevices (34). Although manufacturers of medicaldevices are required by law to conduct tests ofsafety and effectiveness using FDA guidelines, thedefinition of effectiveness employed by FDA haslimited utility for evaluating the health effects ofmedical devices under general conditions of use.On the one hand, FDA considers a device to beeffective when, on the basis of well-controlled in-vestigations or other valid scientific evidence, thedevice is shown to have the effect claimed by themanufacturers under the specified conditions ofuse (21 U.S.C. 260(c)(3)). On the other hand, theHealth Care Financing Administration (HCFA)judges the effectiveness of a medical device interms of its ability to improve health. Thus somedevices approved by FDA for marketing purposesare not covered by HCFA for payment underMedicare or Medicaid (79).

The FDA does not have a policy governing theregulation of software used in computer-assistedhealth instructional programs, but the FDA TaskGroup on Computers and Associated Software asMedical Devices is studying the issue (31). Theproblem is determining which types of programscan be considered medical devices. Preliminarydecisions are that information management sys-tems and programs that merely transfer infor-mation, such as databases, are not medical devicesand thus not subject to FDA regulation. Softwarethat describes self-testing, diagnosis, or treatmentmay be considered to be a medical device exceptin cases where the software merely copies in-structions, i.e., serves as an “automated” book. Ifthe content has been manipulated in any way andconcerns diagnosis or treatment, current think-ing holds that the software may be considereda medical device.

l.2.b: Congress could charge another established gov-ernmental body, or create another governmen -tal body, with responsibility for regulating thesafety and effectiveness of the content of soft-ware for health instructional material not con-cerning drugs or medical devices for the elderlyor for all health instructional software.

There is no Federal agency, including the FDA,specifically charged with evaluating surgical andmedical procedures, including therapeutic coun-seling, before such services are performed. Thequality of the service is governed by the govern-mental licensure and professional certification ofthe providers of the service, and the professionalaccreditation of the providers’ educational facil-ities. Medicare coverage also serves as a minorcontrol of the safety and efficacy of surgical andmedical procedures as well as drugs and devicesused for the elderly (61). HCFA requires a deter-mination-a coverage decision-f the safety andefficacy of technologies before it will reimburseproviders for their use with Medicare benefi-ciaries.

The FDA does not currently have the expertiseto regulate medical products other than drugs anddevices. However, as noted previously, the agencyis considering the issue of regulating instructionalsoftware. The staff could be expanded to includeprofessionals who have the requisite expertise,or professionals from other agencies who havecontent knowledge could be consulted. Creatinga separate body for this one purpose runs counterto current administrative philosophy and oper-ations.

1.3: Congress could stimulate the development ofstandards for assessing the safety and effective-ness of content of software for computer-assistedhealth instruction programs for the older popula -tion. (This option is independent of options 1.1and I.2).

Recognized formal standards for use in evalu-ating the science base or the instructional strat-egy embedded in computer-assisted health in-structional programs for the elderly have notbeen developed by either the public or the pri-vate sector. The director of the Office of DiseasePrevention and Health Promotion has decried thelack of a science base and evaluation of the soft-

178 ● Technology and Aging in America

ware used for health education programs (44). Henotes that “many programs have been written bypersons with inadequate background in health orhealth education, and are not being properly re-viewed.” Moreover, the quality of the instructionalnotebooks of computer-assisted health programsfor the older person has received little attention.Because the way in which information is pre-sented affects the use of the information, a pro-gram needs logic and completeness. The task istimely and costly. Although there is a need to ad-dress the problems associated with the develop-ment of health instructional software, the fieldis too new to have created voluntary standardsto cope with such rapid technological change. 6

At the present time there is marginal activityamong members of the academic community inestablishing standards to evaluate the quality ofhealth instructional software (14,32). As has beennoted, the FDA is classifying types of software asto their standing as medical devices. At the sametime, the FDA is developing standards for assess-ing those software programs that are classifiedas medical devices. However, the standards to beused by the FDA in future evaluations are ex-pected to be limited to assessment of the algo-rithm, or computing method, used in structur-ing the software program and in implementingthe program. If an algorithm relies on varioustests of predictive accuracy, including both sen-sitivity and specificity, the program should per-form satisfactorily. However, as a 1981 report bythe General Accounting Office (GAO) points out,assessment of an algorithm does not always as-sure that the science content of a software pro-gram is accurate. GAO noted a number of casesin which FDA had evaluated a software programand the medical devices were defective becausethe software program used by the manufacturerin the medical device was based on calculationsunacceptable to the scientific community (59).

Even if the FDA were to expand and modify itsevaluation methodology, the FDA process for de-veloping standards has proven very cumbersome.

6 Voluntary standards are generally established by private sectorbodies and are available for use by any person or organization, pri-vate or governmental (OMB Circular A-119, revised, Oct. 26, 1982).

For example, no mandatory performance stand-ards have been developed for Class 11 medicaldevices since Congress passed the Medical DeviceAmendments of 1976. Indeed, the 1981 GAO re-port notes the need to develop alternatives toFDA’s performance standards so that assurancecan be given within a reasonable period of timethat the software of medical devices in generaloperates as expected.

Neither current nor proposed FDA activitiespreclude the development and use of standardsby the private sector, which has initiated manystandards in the health field. voluntary standardscan be used in various ways, In some cases, volun-tary standards are used solely by their developers,usually an industry, to guide the development ofits products and services. In other cases, theyhave formed the basis of governmental standards;e.g., accreditation standards of the Joint Commis-sion on the Accreditation of Hospitals (JCAH) arethe basis for Medicare’s conditions for hospitalparticipation in the program. JCAH’S accredita-tion standards are also used by the private sec-tor to assure the quality of hospital care.

Many professional groups and private enter-prises are involved in the research and develop-ment of software programs for health instructionpurposes, and their number is growing. Thereis, however, insufficient official communicationamong the organizations, and no one type of orga-nization has taken the lead in developing volun-tary standards for use in evaluating the qualityof the content of health instructional software.

One way in which Congress could encouragethe process of developing criteria for use inevaluating health instructional materials for theelderly is to encourage the convening of a con-ference or workshop on the problem. Participantscould represent all interested parties, includingmanufacturers of computers and software, soft-ware programmers, researchers in computer sci-ence and education, health professionals, edu-cators, consumers, and relevant Government bod-ies. The conference would illustrate congressionalrecognition of the need for evaluation standards,initiate a process for their development, and fa-cilitate the cooperation of those with expertise intheir formulation.

Ch. 6—information Technology and the Health of an Aging Population c 179

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