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TITLE Transforming Health Care through Information Technology.Report to the President.

INSTITUTION Executive Office of the President, Washington, DC.; NationalCoordination Office for Information Technology Research andDevelopment, Arlington, VA.

PUB DATE 2001-02-00NOTE 34p.; Produced by the President's Information Technology

Advisory Committee, Panel on Transforming Health Care.

AVAILABLE FROM National Coordination Office for Information TechnologyResearch and Development, 4201 Wilson Blvd., Suite 11-405,Arlington, VA 22230. Tel: 703-292-4873; Fax: 703-292-9097;e-mail: [email protected]; Web site: http://www.itrd.gov. Forfull text available: http://www.hpcc.gov/pubs/index.html.

PUB TYPE Reports - Evaluative (142)EDRS PRICE MF01/PCO2 Plus Postage.DESCRIPTORS *Health Services; Information Systems; *Information

Technology; Medical Care Evaluation; *National Programs;Program Improvement

IDENTIFIERS *Department of Health and Human Services; Health CareReform; Information Infrastructure; United States

ABSTRACTThis is one in a series of reports to the President and

Congress developed by the President's Information Technology AdvisoryCommittee (PITAC) on key contemporary issues in information technology. Thjsreport argues that significant improvements in health care would be possibleif modern clinical information systems were widely implemented and a soundnational health information infrastructure were in place. Challenges torealizing the vision of new technologies providing opportunities forimproving health care are discussed in terms of six findings: lack of anaccepted national vision; critical long-term issues not addressed;decision-support systems needed; too few bioinformatics professionals;reliance on outside innovations; and Department of Health and Human Servicesissues. These findings are followed by six recommendations: establish pilotprojects-and Enabling Technology Centers to extend practical uses ofinformation technology to health care systems and biomedical research; NIH,in close collaboration with other agencies, should design and deploy ascalable national computing and information infrastructure to support thebiomedical research community; congress should enhance existing privacy rulesby enacting legislation that assures sound practices for managing personallyidentifiable health information of any kind; establish programs to increasethe pool of biomedical research and health care professionals with trainingat the intersection of health and information technology; the Data Council ofthe Department of Health and Human Services (DHHS) should outline its visionfor using information technology to improve health care in this country andsubsequently devote the necessary resources to do the basic informationtechnology research critical to accomplishing these goals in the long term;and DHHS should appoint a senior information technology leader to providestrategic leadership across DHHS and focus on the importance of informationtechnology in addressing problems in health care. (AEF)

Reproductions supplied by EDRS are the best that can be madefrom the original document.

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Transforming Health CareThrough

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U.S. DEPARTMENT OF EDUCATIONOffice of Educational Research and Impmvernent

EDUCATIONAL RESOURCES INFORMATIONCENTER (ERIC)

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Points of view or opinions stated in thisdocument do not necessarily representofficial OERI position or policy.

BEST COPY AVAILABLE

President'sInformationTechnologyAdvisoryCommittee

Panel onTransformingHealth Care

Illustration notesThanks to James J. Caras, National Science Foundation designer-illus-

trator, for the cover- illustration.The graphic accompanying this report's text is a schematic of the

clockwise-twisted structure of deoxyribonucleic acid (DNA) thehereditary substance in cells that carries the coded instructions forshaping all forms of life. The graphic indicates the chemical pairs thatmake up this universal genetic code: adenine (A), which always pairswith thymine (T), and guanine (G), which pairs with cytosine (C). Thesuccessful sequencing and mapping announced in February 2001 ofmost of the approximately three billion DNA "letters" in the estimated30,000-35,000 genes of the human genetic blueprint were acceleratedby many years through the use of advanced information technologies.Scientists working in the Human Genome Project public consortiumand in related private efforts relied on high-end computational plat-forms and specialized software to analyze huge quantities of geneticdata in a tiny fraction of the time that calculations by hand would haverequired. The worldwide scientific effort was also speeded becauselarge-scale genetic databases representing pieces of the enormous bio-logical puzzle could be stored and shared over the Internet.

These advanced technologies will also enable researchers to move rap-idly ahead now with studies of the relationships between genetic struc-tures and human diseases.

REPORT TO THE PRESIDENT

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PRESIDENT'S INFORMATION TECHNOLOGY ADVISORY COMMITTEE

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Panel on Transforming Health Care

February 2001

PresidertshromiationTedinologyAdvisoryCornmittee

Cdedrejm

Raj ReddyIrving Wladawsky-Berger

Membersz

Eric A. BenhamouVinton CerfChing-chin ChenDavid CooperSteven D. DorfmanDavid W. DormanRobert EwaldSherrilynne S. FullerHector Garcia-MolinaSusan L GrahamJames N. GrayW. Daniel HillisRobert E. KahnKen KennedyJohn P. MillerDavid C. NagelEdward H. ShonliffeLany SmarrJoe F. ThompsonLeslie VadaszSteven J. Wallach

Febmary 9, 2001

The Honorable George W. BushPresident of the United StatesThe White HouseWashington, DC 20500

Dear Mr. President:

During the past year, the President's Information Technology AdvisoryCommittee (PITAC) has focused much of its attention on providing a visionfor information technology's role in helping to drive progress in the 21"century. As part of this effort, we established several panels to examinespecific issues, including a panel to review the ways in which inforniationtechnology can transform health care and increase access to care for allcitizens. The Federal government has a critical role to play in driving thisprogress, which PITAC has outlined in our report enclosed with this letter,Transfonning Health Care Through Information Technology.

Information technology provides many exciting applications for the healthsector, such as computer-aided surgery, the use of telesensing methods toexamine patients from their homes, and patient/doctor interaction via theInternet and digital medical libraries. Information technology tools canprovide the health care sector with unprecedented productivity and quality ofcare if there is a strategic vision and adequate research to ensure success.However, PITAC found that at present the U.S. lacks a broadlydisseminated and accepted national vision for information technology inhealth care. In addition, the biomedical.community, including the Federalagencies, is not focused on the basic, long-term information technologyresearch required to provide the community with the state of the art toolsnecessary to take full advantage of the Information Age.

In order to rectify this situation, PITAC strongly recommends that theDepartment of Health and Human Services (DHHS) outline its vision forusing information technology to improve health care in this country anddevote the necessary resources to do the basic information technologyresearch critical to accomplishing these goals in the long term. Further,DHHS should appoint a senior information technology leader to providestrategic leadership across DHHS and focus on the importance of informationtechnology in addressing pressing problems in health care. We furtherrecommend four ways that the information technology/health care nexus canbe Accomplished:

do National Coordination Office for Information Technology Research & Development4201 Wlson Boulevard . Suite 11-405 . Arlington, VA 22230

703-292-4873 (1TRD) . FAX (703) 292-9097 . [email protected] www.itrd.gov

5

Page 2 February 9, 2001

First, pilot projects and Enabling Technology Centers should be established toextend the practical uses of information technology to health care systems andbiomedical research;Second, a scalable national computing infrastructure should be provided tosuppat the biomedical research community;Third, Congress should enact legislation that assures sound practices formanaging personally identifiable health information of any kind; andAnd fourth, programs should be established to increase the pool of biomedicalresearch and health care professionals with training at the intersection of healthand information technology.

We hope that these recommendations will represent a major step toward realizing thepotential of information technology to increase every American's access to quality healthcare. PITAC looks forward to working with you, your Administration, and members ofCongress to help dramatically improve our health care system through the use ofinformation technology tools. As PITAC strives to provide sound, well-researched advice,we hope that you and members of your Administration will feel free at any time to discussthese and other important issues with members of the committee.

Sincerely,

Raj ReddyCo-chair

Enclosure

Irving Wladawsky-BergerCo-chair


President's information TechnoiogyMvisory Committee

Co-ChairsRaj Reddy, Ph.D.Herbert A. Simon UniversityProfessor of Computer Science andRoboticsCarnegie Mellon University

Eric A. BenhamouChairman3Com Corporation

Irving Wladawsky-Berger, Ph.D.Vice President for Technology andStrategy, Enterprise Systems GroupIBM Corporation

MembersRobert EwaldPresident and CEOE-Stamp Corporation

Vinton Cerf, Ph.D.Senior Vice President for InternetArchitecture and EngineeringMCI WorldCom

Ching-chih Chen, Ph.D.Professor, Graduate School ofLibrary and Information ScienceSimmons College

David M. Cooper, Ph.D.Associate Director of ComputationLawrence Livermore NationalLaboratory

Steven D. DorfmanRetired Vice ChairmanHughes Electronics Corporation

David W. DormanPresidentAT&T

Sherrilynne S. Fuller, Ph.D.Head, Division of BiomedicalInformatics, Department of MedicalEducationUniversity of Washington Schoolof Medicine

Hector Garcia-Molina, Ph.D.Leonard Bosack and Sandra LernerProfessor, Departments of ComputerScience and Electrical EngineeringStanford University

Susan L. Graham, Ph.D.Chancellor's Professor of ComputerScience, Department of ElectricalEngineering and Computer ScienceUniversity of California atBerkeley

GATC PANEL ON TRANSFORMING HEALTH CARE

CTAGJames N. Gray, Ph.D.Senior Researcher, Scalable ServersResearch Group, and Manager, BayArea Research CenterMicrosoft Corporation

W. Daniel Hillis, Ph.D.Chairman and Chief TechnologyOfficerApplied Minds, Inc.

Robert E. Kahn, Ph.D.PresidentCorporation for National ResearchInitiatives (CNRI)

Ken Kennedy, Ph.D.Director, Center for Research onParallel Computation, and Ann andJohn Doerr Professor of ComputerScienceRice University

John P. Miller, Ph.D.Director, Center for ComputationalBiology, and Professor of BiologyMontana State University

David C. Nagel, Ph.D.PresidentAT&T Labs

Edward H. Shortliffe, Ph.D.Professor and Chair, Department ofMedical InformaticsCollege of Physicians andSurgeons, Columbia University

Larry Smarr, Ph.D.DirectorCalifornia Institute forTelecommunications andInformation Technology

Joe F. Thompson, Ph.D.William L. Giles DistinguishedProfessor of Aerospace Engineering,Department of AerospaceEngineeringMississippi State University

Leslie VadaszExecutive Vice PresidentIntel Corporation, andPresidentIntel Capital

Andrew J. Viterbi, Ph.D.PresidentThe Viterbi Group

Steven J. WallachVice PresidentChiaro Networks


abDe of contents

Members of the President's Information TechnologyAdvisory Committee

Table of contents vii

Panel on Transforming Health Care viii

About this report ix

Acknowledgements xi

Overview 1

Challenges to achieving the vision 4

Finding 1: Lack of an accepted national vision 4

Finding 2: Critical long-term issues not addressed 5

Finding 3: Decision-support systems needed 6

Finding 4: Too few bioinformatics professionals 7

Finding 5: Reliance on outside innovations 7

Finding 6: Department of Health and Human Services issues . . 8

Recommendations 9

Recommendation 1: Pilots and Enabling Technology Centers . . .9

Recommendation 2: Federal research infrastructure 11

Recommendation 3: Medical records privacy legislation 12

Recommendation 4: Support for bioinformatics training 12

Recommendation 5: DHHS capacity-building 13

Recommendation 6: Senior DHHS technology leader 16

Summary 17

Publications of the PITAC 18

Ordering PITAC publications 19


Panei onTransforming Gleaith Care

Co-ChairsSherrilynne S. Fuller, Ph.D.

Edward H. Shortliffe, M.D., Ph.D.

MAC MembersJohn P. Miller, Ph.D.

Robert E. Kahn, Ph.D.Larry Smarr, Ph.D.

Joe F. Thompson, Ph.D.

invited Participants

Takeo Kanade, Ph.D.Director, Robotics Institute, andU.A. and Helen WhitakerUniversity Professor of ComputerScience and RoboticsThe Robotics InstituteCarnegie Mellon University

Sid Karin, Ph.D.Director, San Diego SupercomputerCenter and Professor of ComputerScience and EngineeringUniversity of California, SanDiego

Russell J. Ricci, M.D.General ManagerHealth Care Industry

Bonnie Webber, Ph.D.Professor of Intelligent SystemsDivision of InformaticsUniversity of Edinburgh

Bruce Davie, Ph.D.Cisco FellowCisco Systems, Inc.

Don E. Detmer, M.D.Dennis Gillings Professor of HealthManagement andDirector, Cambridge UniversityHealthThe Judge Institute ofManagementUniversity of Cambridge

John Glaser, Ph.D.Vice President and CIOPartners HealthCare System, Inc.

Eric Horvitz, M.D., Ph.D.Senior Researcher, Group ManagerDecision Theory & AdaptiveSystems GroupMicrosoft Research

10


About THs Report

"Transforming Health Care Through Information Technology" is onein a series of reports to the President and Congress developed by thePresident's Information Technology Advisory Committee (PITAC) onkey contemporary issues in information technology. These focusedreports examine specific aspects of the near- and long-term research anddevelopment and policies we need to capture the potential ofinformation technology to help grow our economy and addressimportant problems facing the Nation.

The 24-member PITAC, comprising corporate and academic leaders,was established by Executive Order of the President in 1997 and renewedfor a two-year term in 1999. Its charge is to provide the Federalgovernment with expert independent guidance on maintainingAmerica's preeminence in high performance computing andcommunications, information technology, and Next Generation InternetR&D.

In February 1999, the PITAC issued an overview and analysis of thecurrent state of Federal information technology research anddevelopment in a report entitled "Information Technology Research:Investing in Our Future." That report set forth a vision of howinformation technology can transform the way we live, learn, work, andplay, with resulting benefits for all Americans. But the report warnedthat Federal information technology research and development isseriously inadequate, given its economic, strategic, and societalimportance. The Committee concluded that the Government is fundingonly a fraction of the research needed to maintain U.S. preeminence ininformation technology and propel the positive transformations itenables.

The Committee identified 10 information technology "NationalChallenge Transformations" that are critical to America's future. Tomeet these transformation challenges, the PITAC recommended astrategic Federal initiative in long-term information technology R&Dand outlined the research priorities that will drive the necessaryadvances in the new century.


CTAGThe PITAC subsequently convened a group of panels led by

Committee members and including invited outside participants withrelevant expertise to examine some of the transforming applications ofinformation technology in greater detail. Three panels focused oninformation technology national challenges: Transforming Government,Transforming Health Care, and Transforming Learning.

Several other panels examined critical technology issues that span thetransformations, including Digital Divide Issues, Digital Libraries,International Issues, and Open Source Software for High EndComputing. Over the past year, each of the panels has analyzed relevantresearch data and documents; held workshop discussions and conductedinterviews with experts in their fields; and studied the fiscal,organizational, and economic implications of strategies to generatenecessary information technology research and development advancesin these key areas of our national life. The Committee plans to conveneadditional panels in the months ahead.

"Transforming Health Care Through Information Technology" andthe other reports in this series present targeted findings andrecommendations to the President and Congress designed to help the

--Nation realize-the vision-of-these positive transformations. Theirbenefits for our future can be extraordinary, but they are notguaranteed. To make the vision a reality, we need the results ofaggressive, well-funded, and well-managed Federal research programs.


AcknowDedgements

The Panel on Transforming Health Care benefited from four recentreports that also address information technology and its potential tochange health care and biomedical research. These are:

"Networking Health: Prescriptions for the Internet" by the NationalResearch Council's Computer Science and TelecommunicationsBoard (through its Committee on Enhancing the Internet forHealth and Biomedical Applications: Technical Requirements andImplementation Strategies). The study was chaired by Edward(Ted) Shortliffe, the co-chair of this PITAC Panel, and included asmembers the following Transforming Health Care Panel members:Bruce Davie, William Detmer, and John Glaser.(See http://books.nap.edu/catalog/9750.html)

The Biomedical Information Science and Technology Initiativereport by the Advisory Committee to the Director, NIH WorkingGroup on Biomedical Computing, which was co-chaired by LarrySmarr, a member of the PITAC Transforming Health Care Panel.(See http://www.nih.gov/about/director/060399.htm)

"Toward a National Health Information Infrastructure," June 2000,National Committee on Vital and Health Statistics Interim Report,which was produced by the Workgroup on National HealthInformation Infrastructure and chaired by Dr. John Lumpkin.(See http://ncvhs.hhs.gov/NHII2kReport.htm)

"Highway to Health: Transforming U.S. Health Care in theInformation Age," March 1996, Council on Competitiveness.(See http://nii.nist.gov/pubs/coc_hghwy_to_hlth/title_page.html)

The Panel enthusiastically supports the recommendations of all fourreports.

The Panel thanks all the Federal managers who provided usefulinformation and guidance for the Panel's deliberations. They included:

Ruzena Bajcsy, Assistant Director, Directorate for Computer andInformation Science, NSF

Mary Clutter, Assistant Director, BIO/OAD, NSF


Mike Huerta, Associate Director, Division of Neuroscience and BasicBehavioral Science, National Institute on Mental Health NIH

Mike Marron, Director, Biomedical Technology, National Center forResearch Resources, NIH

Glenn Rogers, Deputy CIO, Food and Drug Administration (FDA)Ray Russo, Director, Division of Software Engineering Services, FDA

Centers for Disease Control participants:Dr. Claire Broome, Senior Advisor to the Director for Integrated

Health InformationDr. James Hughes, Director, National Center for Infectious DiseasesDr. John Loonsk, Associate Director for Informatics and Chief

Information Officer, National Center for Infectious DiseasesDr. Patrick O'Carroll, Medical Officer, Public Health Practice

Program OfficeCharles Rothwell, Associate Director, ODPSDr. William Yasnoff, Associate Director for Science, Public Health

Practice Program Office

Department of Health and Human Services participants:Bill Braithwaite, Senior Advisor for Health InformaticsBrian Biirns, DASIRM Deptity-CIOBetsy Djamoos, DAS for Policy InitiativesDan Gay lin, Senior AdvisorEileen Salinsky, Director, Division of Health PolicyJim Scanlon, Director, Division of Data PolicyChristy Schmidt, Deputy to the DAS of Health Policy

The Panel would also like to acknowledge the work of the NationalCoordination Office for Information Technology Research andDevelopment in supporting its efforts to produce this report. The Panelthanks Yolanda Come-dy and Kay Howell, who coordinated Panelactivities and kept us on track toward our final report. We thank MarthaMatzke, who edited and formatted the final document. And we aregrateful to Cita Furlani, Director, and the entire staff at the NationalCoordination Office. Our meetings went smoothly because of theircareful preparation.

4


A Vision of Better Health CareEnabled by Information Technology

Telemedicine applications are commonplace. Specialists usevideoconferencing and telesensing methods to interview and even toexamine patients who may be hundreds of miles away. Computer-aided surgery with Internet-based video is used to demonstratesurgical procedures to others. Powerful high-end systems provideexpert advice based on sophisticated analysis of huge amounts ofmedical information. Patients are empowered in making decisionsabout their own care through new models of interaction with theirphysicians and ever-increasing access to biomedical information viadigital medical libraries and the Internet. New communications andmonitoring technologies support treatment of patients comfortablyfrom their own homes.

Information Technology Research: Investing in Our FutureReport to the President, February 1999

President's Information Technology Advisory Committee

veMewInformation technology offers the potential to expand access to health

care significantly, to improve its quality, to reduce its costs, and totransform the conduct of biomedical research. The quality of U.S. healthcare and medical research are the envy of the world, but U.S. health carecosts as a percentage of gross domestic product are among the highest inthe world and are increasing despite recent changes in health careorganization and financing. Further, a recent report from the Institute ofMedicine (I0M), "To Err is Human," points out that despite ourfavorable reputation for especially complex care management, ourhealth care system is not nearly as safe as it could be. The report arguesthat significant improvements in care would be possible if modern

© 15


CTAGclinical information systems were widely implemented and a soundnational health information infrastructure were in place.

Other problems plague the U.S. health care system. Forty-five millionAmericans either have no health insurance or are significantlyunderinsured. Access to care for many others is limited by geography.Hence, while there is much about U.S. health care to admire, we shouldrecognize that there is much yet to be achieved and that informationtechnology can play a major role in facilitating cost-effectiveimprovements that are necessary. The Government has emphasized, inits Health People 2010 Program, that our goal as a Nation should be toassure a healthy population this is key to attaining other importantnational goals such as maintaining a high quality of life, sustaining a

sound economy, and ensuring national security.

Historically, research and education have been the cornerstones ofAmerican health care. The quality and economic efficiency of medicaldiagnosis and therapy have been, and continue to be, driven by acontinual process of analysis, integration, and dissemination of theresults of basic science and clinical research. Advances in informationtechnology (including networking, databases, and computer-basedmethods for collecting, analyzing, and visualizing the data originatingfrom both individuals and populations), offer unprecedentedopportunities for enhancing the quality of research. In turn, they canenhance the efficiency with which new knowledge can be generated,analyzed, and integrated into health care education and delivery.

Advances in information technology can provide the foundation forimportant improvements in health care delivery, such as more cost-effective monitoring and follow-up of patients beyond health carecenters and dynamic, optimal targeting of specific sectors of thepopulation for special education, screening, and early treatment wherenecessary. Information technology can also help to provide betterfeedback loops for connecting providers, policymakers, and patients withlate-breaking research and discussions about clinical decision-makingpolicy. Only information technology can help us take data from recordsof individual care and make them available for analysis of populations,both for the generation of new epidemiological knowledge and for the

1 6


generation of prudent health policy.

It has long been recognized that clinical care involves major issues ininformation generation and management. In recent years it has become clearthat biology, and hence biomedical research, also offer major informationtechnology opportunities and challenges. The growth of statistical methods,such as double-blind randomized clinical trials, has changed the "rules ofevidence" from a reliance on expert opinion to demands for solid evidencewith adequate sample size and good study design.

The "new biology" is inherently an information management andanalysis challenge, with a huge explosion in the size of datasets rangingfrom DNA and protein sequences to high-resolution images of cellularcomponents, tissues, organs, and organisms (including human beings).Information technology is thus becoming essential to the biomedicalresearch community, both to manage and analyze data and to modelbiological processes, giving rise to the field of bioinformatics. Scientistsin major research centers are collaborating around the world on theHuman Genome Project to build the ultimate genetic "road map." Thesize and scope of the Human Genome Project demand intensivecomputing capability. This huge analytical effort also requires a robustcommunications infrastructure to allow colleagues to exchangeinformation and to access the same databases.

Computer modeling and simulation likewise have become increasinglyimportant to the field of medicine. By applying high end computing tocomplex problems, biomedical researchers have developed moreaccurate ways to locate abnormalities where traditional experimentationwould be costly, unethical, dangerous, or simply impossible. Forexample, interactive technologies to steer and make modifications invirtual environments, to control large-scale computations, and tovisualize results can aid in precision surgical planning. Such surgicalgoals require an enhanced level of interaction with high end computing,visualization, and large-scale data computation technologies all withina time-critical environment.

Use of high end computing for the correlation of large clinicaldatabases with related genetic information may similarly lead us to

17


CTAGimportant new insights as we attempt to understand the relationshipsbetween inheritance, disease development, and varying responses totherapy. Insights from such statistical analyses will help to define furtherresearch to assess whether associations discovered in "data mining" are infact based on causal relationships. Similar analyses regarding clinical carepatterns may help to elucidate what factors in our complex adaptivesystems for disease management are the most effective. This will in turnprovide a foundation for identifying the processes of care that should beembedded in computer-based health records.

ha0Denges acMevhig ti Asrion

The health sector will experience unprecedented change as it begins totake advantage of information technologies to increase productivity andto improve the quality of care. While new technologies can provide greatopportunities for improving health care, several challenges exist torealizing the potential benefits to Americans' health and health care. ThePanel made the following findings about these challenges:

Finding 1. The U.S. lacks a broadly disseminated and acceptednational vision for information technology in health care.

Health care organizations are not well prepared to adopt informationtechnology and applications effectively. Health care is largely adecentralized industry populated by diverse organizations with differentmotives, resources, and incentives. Fiscal constraints hinder theindustry's ability to make major investments in informationinfrastructure and applications unless these investments can be shown tolead to significant and low-risk returns. Provider organizations lackinformation about the efficiency of information technology solutions interms of both cost and quality, making it difficult for them to makedecisions about information technology investments. We now havesufficient evidence to state that computer-based patient records cansubstantially improve patient care, outcomes, and costs. Yet to date wedo not have the national commitment to assure that Americans will reapthe benefits of this technology.


The National Committee for Vital and Health Statistics (NCVHS) andthe Data Council of the Department of Health and Human Services(DHHS) do have a template vision for a national health informationinfrastructure. Visions promulgated by committees, however, needfocussed leadership from within the Department and/or the WhiteHouse to develop the program and budgets to make that vision viable.

Finding 2. Critical, long-term research, technology, and policyissues need to be addressed if we are to realize the potential ofinformation technology to improve the practice of health care.

While significant advances in information technology have beenachieved, many hard problems remain. For example, user interfaces thatare easier to use and more easily integrated into the ergonomic patternsof health care can catalyze greater acceptance and use of innovativecomputer-based tools in medicine. Robotics and remote visualizationmethods supported by high-reliability and low-latency communicationsare needed to enable applications such as telepresence surgery.Reliability of systems and software is critical for many health careapplications. Human life may be at risk if information sent to medicalmonitoring or dosage equipment is corrupted or degraded, or ifelectronic medical records cannot be accessed in a timely, reliable way.

Knowledge repositories are an important research topic, includingtechniques for integrating data from multiple sources. Stronger forms ofauthentication are needed, both for persons accessing data and forassuring the integrity of the information. Methods are needed to protectpatients' privacy while allowing valuable medical research and necessaryreimbursement tasks to be performed. In providing health care, doctorsneed to collaborate with researchers, with public-health specialists, andwith the people who manage patient billing. Each of these people, andmany others, need access to part of the patient's medical record, but notnecessarily to the entire record. Better access-control methods wouldmake it possible to partition and isolate the data elements as needed toprotect patient privacy. Improvements in computational capability aretherefore essential, including faster processing and more networkedresources to meet the increased demands of modeling complex systems

cit 19


and performing information retrieval, data analysis, and automatedinferencing.

From a policy perspective, perhaps the most significant problem is thelack of reimbursement for a range of applications that havedemonstrated value, e.g., telemedicine, patient-provider interactionsover the Internet, efforts to reduce medical errors, and initiatives thatlink a patient's data across provider organizations. Further complicatingmatters is the fact that health care providers are currently licensed byindividual states and are generally prohibited from providing care acrossstate lines. This becomes a clear issue when a patient is in one state butthe physician at the other end of a telemedicine link is in another.Liability claims are also handled at the state level, with considerablevariation among states.

Finding 3. The introduction of integrated decision-supportsystems that can proactively foster best practices requires enhancedinformation-technology methods and tools.

Decision-support tools can provide critical links between a currentpatient's condition and previous clinical studies. Existing systems largelyfocus on detecting efrors dt the source, through such methods as rangechecking, alerts, and reminders, or post-hoc quality monitoring andreview. While these types of systems are vital components for improvingquality of care, important information is often unavailable orinaccessible because it is spread across multiple information systemsand/or organizations with differing systems. This can result in poorcoordination of care and increased illness and mortality. The challengeof going beyond these approaches to ones that proactively foster bestpractices will require efforts in the following areas:

o Expanding the range and granularity of routinely captured data

o Standardizing terminology

o Developing robust techniques for incorporating new data types intoexisting clinical data repositories, e.g., images and patientgenotype

'


o Organizing and collecting large-scale databases to determine bestpractices

° Developing guidelines based on such evidence

o Implementing guidelines so that they are usable effectively at thepoint of care, including embedded decision support that iscontinually updated as new evidence accumulates.

° Reducing the cost and difficulty of integrating applications thatreside on heterogeneous technologies

Finding 4. Achieving the potential of information technology toimprove health care will be constrained until we develop a larger cadreof researchers and practitioners who operate at the nexus of health andcomputing/communications.

The United States lacks a widely accepted vision for the creation anduse of information technology tools to increase effectiveness in ourhealth care system. In part, this is due to a lack of critical investment bythe biomedical community in computer infrastructure and enablingtechnologies. This issue becomes increasingly difficult to solve becausethe number of individuals who understand both the health care milieuand information technology is remarkably small. Yet, if DHHS is toaccomplish its mission to improve the quality of health care in the U.S.,an increase in biomedical information technology expertise is a criticalneed.

Finding 5. The biomedical community, including the Federalresearch agencies, has tended to rely on information technologyinnovations that are produced by investments in other parts ofGovernment.

The quality of U.S. health care is increasingly dependent on theeffective use of new and emerging information technologies. Yet Federalhealth agencies have played a limited role in supporting research anddevelopment in computer science. Unfortunately, the health care andbiomedical research communities have generally viewed information


C AGtechnology as a tool to enable health care applications and supportbiomedical research, rather than a critical research field. DHHS hasheavily leveraged information technology research and developmentinvestments made by other Federal agencies such as the DefenseAdvanced Research Projects Agency (DARPA), the Department ofEnergy (DOE), the National Science Foundation (NSF), and theNational Aeronautics and Space Administration (NASA). While DARPA,DOE, NASA and other Federal agencies consistently make significantinvestments in fundamental information technology research anddevelopment, their primary mission is not health care and thereforetheir priorities do not necessarily match the critical needs of health careresearch and education.

DHHS has failed to make vital investments in fundamentalinformation technology research and development and, as a result,health care lags behind other sectors. If DHHS does not begin to makesubstantial investments in information technology research anddevelopment, two serious problems will arise. First, the pace at whichbiomedicine benefits from information technology research will beadversely affected. Second, the needs of the_biornedical community willnot be reflected in the priorities of the other Federal agencies unless thebiomedical community itself is involved in information technologyresearch. Similarly, the biomedical research agencies must collaborate onan equal footing with the other Federal research agencies that havedominated information technology research in the past.

Finding 6. The role and management of information technology inthe Department of Health and Human Services has several limitations,which must be addressed if the health care community is to benefitfrom the promise of the information age.

DHHS does not have a clear, strategic vision of the benefit that thedepartment and all of its agencies could receive from informationtechnology research and use of information technology tools. It isevident that the decentralized management approach of DHHS hasadversely affected both the development of a coherent informationtechnology vision and the influence of departmental activities regarding

CD2 2


information technology and its role in health care and biomedicalresearch. It is important to change this practice and ensure that DHHShas the necessary leadership and budget and a coordinated informationtechnology effort across all its agencies. In our discussions with DHHSagencies, it became clear that they do not have a mandate or budget tosupport information technology research, even though it is fundamentalto their mission.

Although the Administration and Congress have placed a high level ofconfidence in information technology's benefit to this country, DHHS isnot perceived as a significant player in Federal information technologyresearch or policy development. It is clear, however, that state-of-the-artresearch advances in any field require state-of-the-art investmentsaimed at solving problems, developing the technology, and building theright infrastructure.

ecommendaVons

Recommendation 1. Establish pilot projects and EnablingTechnology Centers to extend practical uses of information technologyto health care systems and biomedical research.

The Government has an enormous opportunity to advance thetechnological capability of U.S. health care by funding pilot projects andlarge demonstration programs to explore the application of emerginginformation technologies to health care systems and biomedicalresearch. Few health care organizations have strong incentives toimplement such systems on their own, given the uncertaintiessurrounding the effectiveness of new technologies in health care, thescale at which such systems may need to be built, and the paucity ofhighly skilled information technology professionals needed toimplement such systems.

One excellent current research program, the Federal Next GenerationInternet (NGI) Initiative, aims to provide additional services andcapabilities that could enhance the Internet's ability to support the

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GATC

CTAG

PANEL ON TRANSFORMING HEALTH CARE

needs of the health sector. The NGI will also make available networktestbeds for evaluation of health applications on the Internet and theirrequirements. The networks being deployed by the NGI can support arange of experimental health applications, such as remote medicalconsultations, collaborations among researchers and healthpractitioners, and access to online repositories of information. DHHS isinvolved with the NGI through the National Library of Medicine(NLM), which has awarded several contracts to investigate and develophealth care applications utilizing NGI services and capabilities. NLM'sparticipation provides a critical link with the networking community tohelp ensure that it understands the needs of the health community.

Additional Federal funding would play an important role instimulating necessary research, especially if the funding is focused onapplications that link multiple organizations. In addition to focusing onapplied technology and development for the specified application area,Enabling Technology Centers could make significant contributions toaddressing workforce issues. For example, researchers at the centerscould develop educational programs and curricula to bridge theintersections among computer science, engineering, and the applicationdomain. The centers could also help build communities ofresearchers,health care practitioners, Federal health care officials, industry, andother stakeholders by convening workshops and conferences, andpublishing case studies of successful and unsuccessful uses ofinformation technology.

Examples of recommended projects include:

o Simulation of the human body, from "molecular first principles," tobuild a complete structural and physiological model of the humanbody at many levels between molecular and whole organism (e.g.,organelle and cell assembly, tissues, organs), linking structure tofunctions and processes when known, focusing on commondiseases in a continuum from molecular changes to visible clinicalmanifestations.

o Remote-care applications that integrate sensor technologies and/orremote instrumentation to monitor patients. For example, asignificant number of people who reside in nursing homes are

2, 4


there more for health "security" reasons than for heath carec`needs." Many residents in extended-care facilities could be caredfor at home at significantly reduced costs if the appropriatetelemedicine tools were available to enable remote monitoring.Additionally, many of the home-health visits conducted today arebased on the need to observe or monitor a patient's status, afunction that could be accomplished through interactive videosystems coupled with the appropriate instrumentation and asimple-to-use interface.

° New delivery modes for educating medical practitioners andproviding continuing medical education. Examples includedistance-learning projects, whereby students can attend grandrounds in different hospitals or lectures by experts not available attheir home campus, could permit practitioners to supervisestudents in distant locales.

Recommendation 2. NIH, in close collaboration with NSF,DARPA, and DOE, should design and deploy a scalable nationalcomputing and information infrastructure to support the biomedicalresearch community. This infrastructure should include an aggressivebiomedical computing capability similar to that of DOE's AcceleratedStrategic Computing Initiative (ASCI) program.

Computational-biology and other biomedical problems require thefastest computing cycles and information processing capabilitiesachievable today. And as we seek to improve our knowledge of thehuman body, these computing requirements will grow exponentially.There should be a biomedical equivalent of DOE's ASCI that seeks toprovide multi-teraops/teraflops computing capability to high-end usersand to fund the development of improved algorithms and enablingtechnologies for terascale systems. Facilities with mid-level computersalso should be made available for researchers to test and develop codebefore moving to large systems. These mid-level systems can also beused for developing new algorithms and applications for biologicalproblems.

To enable this distributed, scalable computing environment,investments are needed in software to support grid technologies to


CTAGpermit dynamic allocation of computing and information processingcapability as needed. Long-term information storage and managementof biomedical databases are also important computing infrastructurerequirements. DHHS should work with the community to decide whichdatabases are to be maintained, for how long, and by whom. DHHS alsoshould provide the necessary funding to support the infrastructureneeded to maintain the databases over the long term.

Recommendation 3. Congress should enhance existing privacyrules by enacting legislation that assures sound practices for managingpersonally identifiable health information of any kind.

Protections are needed that deal with unauthorized access anddisclosure and that allow for appropriate access and amendment bypatients. Governing the stewardship of and access to medicalinformation is an important issue. Legislation should identify thenational standards by which information can be shared, should permitelectronic authentication of information, and should includesanctions/penalties for violations. Despite the recent announcement ofprivacy regulations in response to the Health Insurance Portability andAccountability Act of 1996 (HIPAA), uncertainties can be dealt withconvincingly only by a clear legislative mandate.

Recommendation 4. Establish programs to increase the pool ofbiomedical research and health care professionals with training at theintersection of health and information technology.

The Panel applauds the efforts of the NIH 's Biomedical InformationScience and Technology Initiative to establish National Programs ofExcellence in Biomedical Computing to support learning at theinterfaces among biology, mathematics, and computation*. Suchprograms can play a significant role in educating biomedical-computation researchers. DHHS should identify and nurture similarprograms to provide training at the intersection of informationtechnology and health care professionals. For new applications of

* See http://www.nih.gov/about/director/060399.htm.

4CD

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information technology to health care to be envisioned, developed, andimplemented, it will be necessary to build teams of health careapplication experts, biomedical researchers, and computer scientists.Such teams can build bridges among near-, mid-, and long-term R&Dto ensure rapid adoption of new technologies in the health care system.DHHS should explore other educational opportunities, such asexpanding health informatics training programs and curricula withinthe schools of health professions and computer science departments.

Recommendation 5. DHHS should outline its vision for usinginformation technology to improve health care in this country andsubsequently devote the necessary resources to do the basicinformation technology research critical to accomplishing these goalsin the long term.

DHHS should develop an agenda to remove the policy barriers thatcurrently inhibit the use of information technology in support of healthcare. This might, for example, include the development of an expandedagenda at the Health Care Financing Administration (HCFA) to evaluatethe impact of such technologies on care quality and costs and to providereimbursement (or other incentives) should the impact prove to besocially valuable.

The Department should also establish an aggressive research programin computer science that is motivated by health needs. It is importantthat the research program address long-term needs, rather than theapplication of existing information technology to biomedical problems.Some entities within DHHS, most notably NLM but also other elementsof NIH and AHRQ, have invested in research in applications ofcomputing and communications technologies. But much of this workhas had short-term goals and DHHS itself has not made informationtechnology research and development in health- related activities apriority. Financially stressed health care organizations will not increasetheir commitment to the use of information technology without strongleadership and demonstrations of value.

The health community must articulate its needs to the informationtechnology research community and must actively engage in developing

27


CTAGinformation technology solutions. DHHS should play a lead role indoing this. The goals should be to assure that funding agencies andresearchers better understand the ways in which the requirements ofhealth care applications diverge from, or converge with, thoseinnovations needed to support requirements in other sectors, and toensure adequate support for biomedically motivated fundamentalresearch in computer science to address those needs. Illustrativeinformation technology R&D topics important to health care include:

° Information management to enable automated analysis of primarydata; meta-analysis across studies; and automated understanding,indexing, and content retrieval based on combinations of text,audio, images, motion, and context. Also pertinent aremethodologies for "automated policy inference" that integrate datafrom diverse sources (e.g., epidemiologic, economic, demographic,geographic), and models of societal resources and values to suggestplausible public health responses to major health problems.

° Automated tailoring of information access and summaries toaccommodate variations in culture, language, literacy, health-related goals, and reliability of information. Such capabilities aremotivated by the need for seamless access to patient-specific andgeneral medical information at the point of care, specifically whenrelevant to an individual's immediate care and when context-sensitive to a provider's prior knowledge and history of priorsystem use.

° Research on user-interface hardware and software to promote thedevelopment of better solutions to the problem of human-computer interaction in health care. Advances are needed inembedded intelligent agents, hands-free computing environments,natural language processing, speech understanding, handwritingrecognition, and notepad inputting schemes.*

* This recommendation was also made in the Council On Competitivenessreport, "Highway to Health: Transforming U.S. Health Care in.the InformationAge", March 1996, http://nii.nist.gov/pubs/coc_hghwy_to_hlth/chp5.html.

028


° Multimodal information management of clinical images to supportautomated indexing ("image digests") using both imageprocessing, with power sufficient to retrieve "look alikes" withouthuman-assigned textual tags, and also biostructural 4-D indexing(3-D + change over time). Examples would include automatedindexing and retrieval of videos showing gait dysfunction andneurologic syndromes; language understanding to supportautomated indexing of full text to permit document retrieval withhigh precision and recall; and techniques to recognize andgenerate spoken language to support indexing, capture, use, andretrieval of voice input.

o Research in advanced networking services including: techniques forassuring quality of service across the Internet to assure thatinformation will be delivered to its destination quickly andaccurately; multicast capability to make more efficient use ofavailable bandwidth to distribute information simultaneouslyfrom one user to a number of specific recipients; symmetric ordynamically reconfigurable broadband technologies for the "lastmile" (i.e., connections between the Internet and homes oroffices); and wireless technologies to support untethered access tocomputers and information.

o Development and availability of high-end systems to supportmodeling of biological processes and both management andanalysis of data. Implied components include research inmiddleware, algorithms, data management, and visualization oflarge data sets to enable efficient use of such high-end systems.

o Privacy, security, and authentication to ensure that information isavailable to those who need it, protected against those lackingproper credentials, and not modified, either intentionally orunintentionally, in violation of established policies andprocedures.

o Research to help us better understand the ethical implications ofinformation technology on the health care system. For example,vendors, health care delivery organizations, and payers will need


CTAGto consider the cultural, economic, and generational diversity ofthe population when developing health and wellness informationproducts and services. Issues to consider include the technicalliteracy of the targeted population as well as its access to certaininformation-delivery tools in order to select appropriate meansand formats of communication.

Recommendation 6. DHHS should appoint a senior informationtechnology leader to provide strategic leadership across DHHS andfocus on the importance of information technology in addressingpressing problems in health care.

Information technology is of critical importance to the Nation and canbe instrumental in providing the best possible health care to all of ourcitizens. At this time, information technology research and use are notviewed within DHHS as strategically as is necessary. We thereforerecommend that DHHS create a high-level position designed to providethe necessary vision for the agency in its efforts to incorporateinformation technology in its agency mission and strategy. While wecannot best judge how this should be accomplished, we recommend thatthe position be at least at a level equivalent to the deputy undersecretary.This person should be an expert who operates at the nexus of healthand computing/ communications. In addition, a budget should beprovided to facilitate this person's coordinating and educationalactivities.

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Summary

New information technologies have the potential to dramaticallyimprove our health care system as it exists today. Informationtechnology can help ensure that health-related information and servicesare available anytime and anywhere, permit health care practitioners toaccess patient information wherever it may be located, and helpresearchers better understand the human body, share information, andultimately develop more beneficial treatments to keep Americanshealthy. Implementing the recommendations made in this report wouldrepresent a major step toward realizing the potential of informationtechnology to increase every American's access to quality health care andto decrease the cost of health care delivery. The Federal government hasa unique role to play in supporting research in this critical area and incoordinating its own cross-agency activities in the application ofinformation technology to health care.

©

PANEL ON TRANSFORMING HEALTH CARE

Publications ofThe President's Information Technology

Advisory Committee

Information Technology Research: Investing in Our Future,

February 1999, 80 pages.

Resolving the Digital Divide: Information, Access, and Opportunity,


Transforming Access to Government Through Information

Technology, September 2000, 32 pages.

Developing Open Source Software To Advance High End

Computing, October 2000, 28 pages.

Transforming Health Care Through Information Technology,


Using Information Technology To Transform the Way We Learn,


Digital Libraries: Universal Access to Human Knowledge,


32

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National Coordination Office forInformation Technology Research and Development

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(703) 292-4873Fax: (703) 292-9097E-mail: [email protected]

PITAC documents are also available on the NCO Web site:

http://www.itrd.gov

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