STATEMENT OF MICHAEL D. MCDONALD, MPH CHAIRMAN OF CCAPH (COMMUNICATIONS & COMPUTER APPLICATIONS IN PUBLIC HEALTH) PRESIDENT OF WINDOM HEALTH ENTERPRISES BEFORE THE SUBCOMMITTEE ON TELECOMMUNICATIONS AND FINANCE OF THE HOUSE ENERGY AND COMMERCE COMMITTEE Mr. Chairman: It is an honor to testify before this subcommittee today. My name is Michael McDonald. I am chairman of Communications and Computer Applications in Public Health (CCAPH), an association of approximately 800 individuals with an interest or involvement in health informatics. CCAPH works with professional associations, like the American Public Health Association, and government on issues of health informatics research, development, education, and policy analysis. I am also president of Windom Health Enterprises, a California-based corporation specializing in the design of health systems and health-oriented communications. Windom's clients include large corporations, HMOs, hospitals, cities, counties, and the Federal government. Also pertinent to my testimony today, I coordinated a recent plenary on the national health information infrastructure held at the American Public Health Association meeting in Washington D.C. this past November. Today, I would first like to talk to you about the health ramifications of building an information-based economy. I will also discuss the merits of the national health information infrastructure, and the health applications it will spawn, in terms of their impact on the health of Americans and our health system's viability. I will use the terms, "health informatics" or "health-oriented telecommunications," to refer to the use of computers, interactive information strategies, or communications for health purposes. I will also use the term, "social ecology" to refer to the complex web of social interaction which determines the well-being and productivity of our society and its inhabitants as related to such concerns as jobs, societal vision, communication patterns, services, aspirations, personal and political relationships, and diffusion of technology. To introduce the main points of my presentation today, I would like to make five assertions up front. Although the fifth assertion most directly answers the Subcommittee's question regarding existing and potential health-oriented telecommunications applications, the first four points explain why these applications do not directly reflect and logically extend only from the structure of health care as we know it today. 1) America is going through a societal transition from the industrial age to the information age. This shift, mediated by the information infrastructure, is having profound affects on health, not just through medical care. 2) Patterns of health and disease are likely to be strikingly different in the information age than in the industrial age. There is hope of further decreasing the incidence of both acute injuries (e.g., car and industrial accidents) and chronic illnesses (e.g., heart disease, stroke, and certain cancers), as well as preventing disease related to environment degradation, both physical and social (e.g., skin cancers due to ozone depletion and homicide and suicide related to deplorable social environments and drug abuse). However, new disease patterns may emerge (e.g., VDT-induced repetitive motion injuries and new types of environmental and stress-induced illnesses). 3) America, as it shifts its focus from an industrial- to an information-based economy, is likely to witness a rise in diseases of adaptation (diseases caused by economic displacement and people's inability to effectively cope with rapid change). We, as a nation, can lessen the suffering associated with the diseases of adaptation by structuring our society to help the American public cope with extensive changes that will affect the social ecology of our nation over the next few decades. 4) The policies drafted by this subcommittee, this Congress, and this Administration will establish not only the form of the information infrastructure; they will, whether intended or not, also affect the patterns of health and disease through shaping the social ecology of our nation. We must consider these impacts as we build our nation's information infrastructure, since the social ecology of America will be a major determinant of the health of our citizens in the information age. 5) Health-oriented telecommunications (HOT) applications will be a primary determinant of health during the information age. The nature and speed with which HOT applications emerge will be strongly influenced by the actions of the Telecommunications and Finance subcommittee in terms of how its policies shape the national health information infrastructure. This subcommittee will hopefully consider the realities of today's health care crisis, and the crucial role information technologies play in its resolution, while it drafts legislation to modernize the national information infrastructure. Ideally, the health information infrastructure will be designed to decrease the cost of health care while improving access, service outcomes -- and, most importantly, the overall health status of the nation, especially those at highest risk. In order to accomplish these goals, the national health information infrastructure should include five elements: 1) administrative information systems including a universal electronic claims structure; 2) clinical information systems and computerized patient record; 3) telemedicine, especially home-based telemedicine; 4) personal health information systems (providing health information and decision-support directly to the general public); and 5) population data structures and system coordination. THE SHIFT FROM INDUSTRIAL SOCIETY TO INFORMATION SOCIETY America is in transition. We already feel the effects of the rapid changes on our lives, yet most of us do not have enough historical perspective to understand the contextual nature of these changes. We are undergoing a shift of age from industrial society to information society. This has major ramifications for the health of Americans, as did the shift from the agricultural age to the industrial age in the late 19th and early 20th century. If our nation considers health impacts when making information infrastructure decisions, then we may be able to further increase our longevity, our productive capacity, and our quality of life at lesser cost to society. If we do not, the overall incidence of disease is likely to increase, further exacerbating medical costs and the present health care crisis. Decisions acknowledging and addressing the citizenry's ability to cope with rapid change in social ecology over next few decades, could have a very important impact on health indicators. If the current societal transition is like the shift from the agricultural age to the industrial period, health and disease patterns will worsen before getting better, unless specific actions are undertaken to ameliorate problems of adaptation. Structural interventions, such as modernizing universal service provisions, are likely to be far less costly than dealing with these problems after the fact through the medical system. America is already in the midst of major change. Only 3% of the population now works in the agricultural sector, whereas 40% were agricultural workers between 1890 and 1900. Today industrial workers now represent only 17% of the work force. Over the next two decades, both the service sector (e.g., health workers, lawyers) and the industrial sector will lose jobs, while the information sector (e.g., data processing, information services) will grow in both percentage of gross revenues and number of jobs. Information workers (i.e., those employed as either primary or secondary information workers) have, in fact, already increased at a dramatic rate over the past few decades. They represent about 55% of workforce today. With the introduction of the intelligent network, this percentage is likely to increase even further during the next few decades. It is thought that many secondary information jobs (those working in information intensive positions within manufacturing and the service industry) will be moving to the primary information sector. Many of our manufacturing jobs are disappearing due to domestic plants adopting robotics and automation, and as a result of the blossoming of manufacturing efforts in other regions of the world, such as Japan, Germany, Mexico, and Korea. Some argue that America must recapture its manufacturing base, while others, like Vice President Gore, are suggesting that our future prosperity as a nation and our leadership in the community of nations is more dependent upon the growth of our information sector (including the secondary information jobs located within the agricultural, industrial, or service sectors). Over the same period that we have witnessed the decline in American industry, the health of Americans has declined in comparison to other developed nations. This is not correlated with a decline in investment in health and medical services. In fact, the decline in the health of Americans as compared to other developed nations has been inversely proportional to our investment in medical services. For those who can afford it, the American health system still provides the best technology for secondary and tertiary care in the world. However, in the past two decades, the United States has gone from a position of leadership on almost all health indicators to its poor performance in relation to other developed nations today. Although we spend far more than other nations on health care (almost 14% of our GNP versus 8% to 10% in Europe), we rank 22nd in infant mortality, 26th in maternal mortality, and 7th in overall longevity. Worst of all, we are now at the bottom of developed nations in terms of poverty rates and services for the poor. With nearly no benefit resulting from the one hundred billion dollars more we will spend on health services this year over last year, our investment in medical services has clearly gone beyond the point of diminishing returns. This does not necessarily mean that we, as a nation, are in permanent decline, nor that we must expect declining health status among developed nations. We can again establish our leadership in a rapidly growing sector of the global economy. The fastest growing sector of our own economy has been and will likely continue to be in computing, communications, and information services. For example, the personal computer market developed into a $100 billion marketplace within the decade of the 1980s. Yet, this growth is dwarfed in comparison to John Sculley's prediction of a $3.5 trillion information marketplace around the year 2002. Rapid change over the next few decades is likely to increase the incidence of diseases of adaptation (diseases arising out of economic displacement and problems coping with social change). On the surface, this might seem like a prescription for slower movement into the information-based social ecology. However, given the choice of a stagnant or declining economy to a vital, but fast growing economy with massive changes in social infrastructure, the better choice in terms of health and quality of life would be to choose a sustainable growing economy. This choice becomes even more clear, when we realize that our continued role as an economic world leader depends on our acting quickly. For example, control of the growing information marketplace may determine geopolitical control in a potentially turbulent, post cold war era of constrained energy and other natural resources. In fact, if the United States does not solidify a position of leadership through pioneering in the information infrastructure, Japan, other pacific rim countries, and a unified Europe will likely assume leadership in the emerging global information economy. This, of course, does not need to be if America encourages, rather than stifles, its strongest information sector businesses to invest in the emerging interactive information infrastructure. We are fairly well placed, with an updating of our national communications policy and a modest stimulation to the information economy through government investment in information infrastructure and the pre-competitive information marketplace. If the government, with the consensus of private enterprise, invests in the growth of the information infrastructure, this will encourage and enable the private sector to invest at reasonable levels of risk. Economic growth, and renewed leadership in the international community will be the outcome. Part of the investment our nation must make to seize the opportunities of a $3.5 trillion information marketplace is to develop an appropriate human resource base to maintain our leadership among nations. This means we, as a society, must invest in infrastructure which supports both education and health. I will not dwell on the educational issues today, other than to say that much of the same information infrastructure that is needed for education is also necessary for improving the efficiency and effectiveness of the American health system. Some may ask how can we justify more expenditures to improve health, when we are already spending 14% of our GNP toward health care with a continued medical inflation rate of 2 to 3 times that of the consumer price index. Clearly, we must invest in health informatics solutions which bring medical cost inflation in line with or below the average rate of inflation. This is why we must think beyond the conventional elements of the health information infrastructure (administrative and clinical information systems) to add three other elements (telemedicine, personal health information systems, and population data structures and coordination systems). Once all five elements are intact, we as a nation could save 70 to 100 billion dollars a year on health care expenditures. That figure, however, cannot begin to measure the heavy toll taken in terms of premature death, disability, reduced productivity, and diminished quality of life if we are not able to establish this infrastructure. When all these factors are accounted for, the savings from building a balanced health information infrastructure could total approximately one trillion dollars by around the turn of the century while improving health status. The National Health Information Infrastructure Last November, the first plenary on the national health information infrastructure was held at the American Public Health Association Annual Meeting in Washington D.C. This Plenary, which included a broad spectrum of leaders from the health sector, identified the most central development needs of the national health information infrastructure. Participants developed issues and recommendations to be submitted to a task force on the National Health Information Infrastructure this year. The five primary elements they identified as lowering medical cost inflation, while improving access and quality of care, are discussed below. 1) Administrative Information Systems & Unified Electronic Claims Approximately 26% of health care costs in the United States go toward administration. Canada spends less than half of this amount. Part of the reason for this difference is that there are 1500 different insurance companies in the United States using many different claims forms; Canada has one form. By switching to a electronic unified claims form and other forms of electronic data interchange and electronic transaction services for health care administrative transactions and inventorying, an Arthur D. Little study indicates that approximately $6 billion could be saved per year. Hawaii, Oregon, New York, Vermont, Wisconsin, San Mateo County in California, and Minnesota are already beginning to experiment with administrative systems. 2) Clinical Information Systems and Computerized Patient Record The system we, as a nation, adopt for accessing, storing, and transmitting medical information should allow records to be accessed instantaneously anywhere in the country by authorized personnel. According to an Arthur D. Little study, approximately $15 billion a year could be saved by implementing this type of system. The system should include a universal medical data dictionary. It should have a multimedia interface that allows access, storage and transmission of text, audio, and visual information (X-rays, pathology slides, medical imaging capability). Enhanced computing capability would improve and enable many new applications such as surgical telepresence. Telepresence and virtual reality capabilities in the operating room can expand the functionality of minimally invasive surgery and improve clinical outcomes. For example, a patient with a gall bladder operation using traditional surgery would normally have significant scarring and would need to stay in the hospital for days or weeks. In an operating room with telepresence, a surgeon inserts a fiber optic videoscope into the abdomen of the patient through one port (small hole) and robotically-operated surgical instruments through another port. As a result, the surgeon can now look into the body via a computer workstation several feet or several thousand miles away from the patient. The benefits from this approach are many: minimal infection risk (because the abdomen is not opened up to the air and, therefore, remains sterile); minimal or no scarring (because the surgical ports are small); the patient can often leave the hospital the next day with far less pain and complications (because the trauma and complications from minimally invasive surgery are dramatically reduced). There are six to eight major commercial computerized patient records available today. The Department of Defense has planned a $1.55 billion Composite Health Care system with an exemplary computerized patient record, which some believe might become the standard computerized patient record in the future. 3) Home-based Telemedicine According to the Arthur D. Little study, home-based telemedicine could save between $15 billion and $20 billion dollars per year. Home-based telemedicine would allow the health professional to monitor and interact with the patient remotely via a system that merges the computer, video, and the telephone. It would also allow the practitioner to utilize more technological support and expertise through an intelligent network while visiting the patient in the home. It would help the elderly to remain self-sufficient in the home longer and aid the chronically ill in receiving more of the care they need outside of the hospital and doctor's office. According to a recent study at Dartmouth, physicians doing follow-up by telephone clinical visits reduced the number of clinical visits by 28% and hospital days by around 30%. Telemetry (the ability to measure physiological functions remotely), data aggregation and analysis, and two-way video applications would further expand the quality and scope of telemedicine. In the past two years, two-way telemedicine projects have been launched in Texas, Georgia, and West Virginia. Less sophisticated digital still image transfer is several states including Iowa, North Carolina and Nevada. 4) Personal Health Information Systems Seventy to eighty percent of health problems can be managed by self care. Even assuming that personal health information systems would be used only 25% to 35% of the time, $40 billion to $60 billion a year could be saved. Research and development efforts in the fields of self care, prevention, and health promotion (e.g., HealthWise studies, the Stanford/Blue Cross study, Employee Managed Care Corporation's trials, and the Harvard Community Health Plan's home computer link) demonstrate that more than 95% of the first line of health decision making is accomplished outside of the health system today, by the individual alone or with the help of family and friends. When an individual needs medical attention, seventy percent of a correct diagnosis depends upon the information a patient tells a physician. Unfortunately, the tools available to aid individuals in taking care of themselves and becoming an active and informed part of their own health care are the most undeveloped parts of our health system. As a result, far too many people (common estimates are 50% to 80%) entering the health system do not really need a physician's care. Large numbers improperly utilize the system (e.g. using the emergency room for back strain or a cold). In addition, 60% of those who end up with serious health problems come into the health system too late, and as a result, require more extensive, risky, painful, and costly therapy. Part of the reason self care, prevention, and health promotion are so underdeveloped is that traditional print and mass media do not allow individuals to access health information when they need it, in a form that aids appropriate decision making. Health-oriented telecommunication applications are likely to revolutionize this part of the health system by making available anything people need or want to know about their health 24 hours a day, 7 days a week, in the home, school, workplace, or through public terminals (like public telephones with video screens and digital capabilities). Unlike the non-interactive media, the interactive personal health information system will give the individual customized information and decision-support unique to them. For example, if John Smith seeks advice about how to manage his health problems, he could use a personal health information system. The system would "know" that John is a 54 year old man with diabetes and a family history of heart disease by accessing data John makes available from his personal health record . Using artificial intelligence, the system would also "consider" many other factors from John's medical history and periodic risk assessments, if available, when giving him information and decision-support. When giving information or decision-support regarding chest pain or even a request for an exercise plan, the system's responses would be very different for John than for a 25 year old athlete without significant risk factors. 5) Population Data Structure and System Coordination There needs to be a standardized population data structure underlying the medical and personal health information systems that allows aggregation and access on the local, regional, and state levels in near real-time. This type of system will become central to many aspects of public health over the next decade. Today, reporting of diseases is poor, and the aggregation of population data is cumbersome and time consuming. A well designed and implemented population data structure is essential for improving outcomes research and surveillance of epidemics and endemic disease patterns. Better outcomes data would lead to more uniform, effective and efficient clinical guidelines. If public health professionals had the ability to instantaneously, reliably and systematically aggregate data in real time from medical records and personal health information systems -- independent of personal identifiers -- control of epidemics and endemic disease patterns would become far more effective. Several pilots of these types of population data systems exist today. Use of the Centers for Disease Control's Wonder system is perhaps the most advanced system available allowing the researcher to ask 'what if' questions online from anywhere in the country while studying disease patterns. The Codman database allows the researcher to study preventable hospital discharges by a geographic information system. The Vietnam Trauma Database allows the researcher to visualize 1000s of data points in a six dimensional cyberspace to reach a level of conceptual understanding not feasible with traditional databases. Cost savings are undetermined in this area, but are likely to be significant, perhaps in excess of $20 billion per year, if the results are properly utilized. In addition to discussing the five key health information infrastructure issues outlined above, plenary participants also developed the following core policy recommendations to support the evolution of the infrastructure. Privacy and Confidentiality The privacy and confidentiality of all health records must be maintained. Strong precedents and methods (e.g., traditional confidentiality regarding medical claims, encryption strategies, census data privacy protection) exist that can be used to formulate policy in this area, but more still needs to be done. Without the ability to ensure the privacy and confidentiality of electronic health and medical information, the full potential of health information systems will not be realized. Several factors must be considered when drafting privacy guidelines. First, information must be accessible for outcomes research and surveillance without personal identifiers or any threat to confidentiality. Second, individuals must be able to control access to their records. Third, information must be available for emergency care. Finally, guidelines should be constructed with the help of both government and professional associations to diminish liability for those adhering to nationally accepted guidelines. For example, strategies exist for the segmentation of records, but a single approach, or set of approaches, has yet to be endorsed on a national basis. Universal Access Just as the United States now has universal phone service, the principles for universal access within interactive multimedia must also be established. This is absolutely essential if we are to bring health information services to the economically disadvantaged. These populations generally have greater problems with their health and are in greatest need of information services. The cost of providing medical care for the disadvantaged is in the hundreds of billions per year and yet there are still large numbers of people improperly cared for. A fraction of the cost now spent on medical services could be used to build the infrastructure to save not only dollars, but lives. Universal access to interactive multimedia must include not only two-way imaging transfer to and from professional offices and hospitals, but also two-way, digital, switched, broad band capability into homes. The greatest medical savings will result from empowering the public to take better care of their own health by providing interactive health information and decision support. An additional benefit of developing the infrastructure to provide universal access to health information is that the same infrastructure would support library, educational, entertainment, telecommuting and other information services. Coordination and Standardization A properly designed and interconnected national health information infrastructure would immediately improve coordination of services. This might start with coordination among agencies, but would also help overcome discontinuities in services and coverage throughout the health system. Data set standardization is essential. The communication industry must also set standards for ease of use and connectivity. This task will be challenging, given the interLATA restrictions on the Regional Bell Operating companies which can lead to separate and incompatible technical protocols. Coordination and standards efforts should extend to system content as well as to services used in conjunction with the information systems. Quality Assurance Data integrity (i.e., information accuracy, currency, and reliability) is critical to the health information infrastructure. If quality standards for health records are set, outcomes research will blossom, yielding valuable information having direct impact on the quality of health care. It will also help us evaluate and refine health reform efforts. Ideally, core life- and health-critical data for the personal health information systems would be established at the highest level of scientific authority. For example, the Institute of Medicine might oversee the dispersement of SBIR grants to develop a standard set of core health information for the personal health information system. This would not only ensure the quality of the health- and life-critical data delivered directly to the general public, but it would also simultaneously diminish the liability of such information by having it created and certified as correct and up-to-date by the world's experts. The core information, if sponsored by government or private foundation funds, could be put into the public domain. This would catalyze the growth of a wide variety of information providers to create further health information content to expand upon the life- and health-critical core information. Given that there are substantial standards- setting activities already underway, government should make an effort to aid this process and be careful not to supersede efforts that would otherwise accomplish the same end with broader consensus. Focused Demonstrations and Clearinghouse Focused demonstrations would bring attention to the potentials of health information services, test their viability, and catalyze their growth. A clearinghouse of health information services and technologies (e.g., Department of Health and Human Services' Center for Advanced Health Communications Technologies) would coordinate information regarding these projects and act as an incubator for other public and privately funded projects. SIGNIFICANCE OF NATIONAL INFORMATION INFRASTRUCTURE A national information infrastructure with high performance computing and high speed networking capacity, if properly designed, directed, and expanded, will catalyze the rapid growth of a diverse and fruitful information-based economy -- including within the health sector. The outcome will be products and services that serve the public interest, the creation of jobs, and the generation of profits and, therefore, tax revenues. Continued Bell company participation in the information service industry alone will create nearly 1.5 million new jobs within the decade. Job creation in the entire information infrastructure could be many times this amount. John Sculley, President of Apple Computer, claims that a three and half trillion dollar information marketplace (including computers, telecommunications, and information services) will evolve by around the turn of the century. If the vision of the telecommunications and computer industries is even partially correct, the information sector will be the most vital and vibrant part of the American economy well into the 21st century. Our government can not take on the task of building the entire intelligent network by itself. Nor should it involve itself in activities that free enterprise can appropriately address. It should, however, nurture leadership within the private sector by helping to direct its gaze toward the future market opportunities. This will decrease the amount of corporate and legislative time and resources fruitlessly spent trying to protect existing self-interests, to the detriment of the much larger future market opportunities better serving the public interest. The government should be looking for willing partners not only in the large and medium-sized businesses, but also in the small information providers far down the economic food chain -- where so often the greatest innovations take place. If the government is able to provide this type of leadership through proper policy development, the United States will blaze a rapid path toward realizing Vice President Gore's goal of a thriving information sector that supports all other sectors of the economy. The National Information Infrastructure could establish vital demonstration projects to support the development of the national health information infrastructure. We know that government research and development of this type (e.g., the Highway infrastructure projects of the 1950s) greatly aid early development of any infrastructure. Government funding in infrastructure will encourage businesses to invest, and therefore, will stimulate the growth of very successful new economic sectors. The National Health Information Infrastructure has a high probability of not only catalyzing economic growth, but also redirecting our society toward more environment-friendly and energy self-sufficient economic activities. It is logical to choose the health sector for demonstration projects, since information is so crucial for good health and efficient health services. Moreover, properly directed demonstrations could even significantly reduce medical cost inflation and, as a result, help diminish the federal deficit. In order to effectively address these important societal initiatives, the health applications demonstrated by the project must support the goal of significantly lowering medical cost inflation while improving access and quality of health services. Some of the advanced health-oriented telecommunications applications such as telepresence and virtual reality applications are dramatic and compelling improvements to medical care. Such applications can extend the effectiveness of minimally invasive surgery, for example. However, the greatest contribution to lowering medical costs lies not in directing large amounts toward ultra high tech medical applications, but rather in building a balanced approach to the five application areas that are key elements of the health information infrastructure (computerized patient record and clinical system, home-based telemedicine, the personal health information system, population data structures, and electronic data interchange and electronic claims processing). Once implemented, a balanced national health information infrastructure will save at least $70 billion to $100 billion per year. Seventy-five percent of the cost savings will result by accomplishing two goals: 1) empowering the public to take better care of themselves and make wiser choices about their utilization of health services; and 2) helping chronically ill and aging individuals to receive appropriate medical services and supervision while living better and fuller lives in the comfort of their own homes, surrounded by their family and friends. Priority should be given to these applications, because of their significant potential contribution. CONCLUSION If telecommunications legislation in the United States can stimulate the growth of a broad and diverse global information marketplace -- including health-oriented telecommunications applications -- with leadership by United States computer, telecommunications, and information provision companies, the future prosperity of America and the future health of Americans looks bright. The United States could save approximately one trillion dollars by around the turn of the century on health care costs, if a national health information infrastructure is built to supplement our present focus on medical applications alone. Policies made here in this subcommittee and in this session of Congress can help build an infrastructure which will reverse the present decline in the health of Americans in comparison to other nations. In order to help break the dangerous upward spiral of medical care costs, the national health information infrastructure must address the undeveloped areas of our health system, such as home care, self care, prevention, health promotion, outcomes research, and better disease pattern monitoring in populations. The health information infrastructure can reduce the costs of health care significantly if our information infrastructure is designed to include applications which assist our chronically ill and aging citizens to be more self sufficient in their home environment, while still receiving quality care. The infrastructure can provide the public as well as providers with better, more accurate, and more timely health information, so that we as citizens can become more responsible consumers of health care, and be more able to maintain and improve our own health at far less cost to society. If this Congress can stimulate America's computing, telecommunications, and information provision industries to build our intelligent network, we will have grasped a unique opportunity to prepare our nation, and reorient our health system, for the 21st century. Thank you for focusing the attention of this decision-making body on these issues of vital importance to our nation and the health of our citizens.