Interim Report

Toward a National Health Information Infrastructure

June 2000

National Committee on Vital and Health Statistics

Toward a National Health Information Infrastructure

INTERIM REPORT


Table of Contents

 


Toward a National Health Information Infrastructure

INTERIM REPORT

prepared by

The National Committee on Vital and Health Statistics

Workgroup on the National Health Information Infrastructure(1)


1. Opportunities to Improve Health and Health Care

The new century brings with it fresh hope that significant improvements in the public's health and well-being are not only possible, but close at hand. Health, we now realize, is not merely the absence of illness. Nor is health achieved solely by combating disease. Rather, as the World Health Organization puts it, health is a "state of complete physical, mental, and social well-being." Health is also clearly more than an individual matter. Personal and community health are closely connected, and depend on interwoven factors: policies, economics, the environment, housing, and heredity, to name a few. Improvements in both personal and community health are essential for a healthier nation.

The sheer breadth of the challenges facing us as a nation calls for an equally expansive and innovative response. Fortunately, we find ourselves in the midst of a dynamic technological era where dramatic transformations in information and communication technologies offer innovative and unprecedented opportunities for health improvements on a national and global scale. The framework that can link health improvements and information technologies is the National Health Information Infrastructure (NHII).

The NHII does not exist yet in a comprehensive way. Although many pieces of an NHII are well-developed and already in use, others are only now emerging and evolving. As envisioned in this paper, the NHII is the set of technologies, standards, applications, systems, values, and laws that support all facets of individual health, health care, and public health. The broad goal of the NHII is to deliver information to individuals - consumers, patients, and professionals - when and where they need it, so they can use this information to make informed decisions about health and health care.

The NHII is not an effort to collect personal health data from individuals or health care providers. Nor is it the creation of a centralized government database to store personal information about individuals. Rather, the NHII offers a way to connect distributed health data in the framework of a secure network. Comprehensive federal and state health information privacy legislation will ensure that the network will have strict, built-in confidentiality protections for personal health information and tools that individuals can use to protect their information and privacy.

Consumers, patients, health care providers and managers, public health professionals, and policymakers share an interest in promoting equitable access to high-quality health information, available any time, any place. A recent Institute of Medicine report found that up to 98,000 people die unnecessarily each year in U.S. hospitals from preventable medical errors, which makes errors the fifth leading cause of death. A dramatic reduction in such medical mistakes and in other adverse effects of care is one of the most significant benefits that we can expect from the NHII.

The day is not far off when a patient, pharmacy and doctor all communicate routinely through an electronic system. Consider the following story of Sam King and Dr. Jose Hernandez.

Sam: I've had this awful cough that won't go away, so I finally saw Dr. Hernandez, who checked me out and took some tests. He prescribed XX and said I should take it 2 times a day. But as Dr. Hernandez entered the name of the drug into my personal medical record, the computer beeped. My doc told me the computer was warning him that some people with health conditions like mine have developed a rash and muscle cramps when taking the drug he was going to give me. I told him, "Good catch," and was glad he wired a prescription for something else to my drugstore. Before I left, I asked Dr. Hernandez to send the prescription information to my personal health record.

Dr. Hernandez: Mr. Sam King came in last week with a persistent cough. I diagnosed ZZ, and decided to prescribe XX. But when I entered the diagnosis and prescription into Mr. King's electronic medical record, which is part of our Clinical Management System, I was told to link to the drug manufacturer's database to check out an important alert. What I found was an urgent notice about widely scattered reactions in patients with chronic conditions like Mr. King's. I quickly changed his prescription. A short time later, our CMS system got an "all points" bulletin from the manufacturer about this drug. Of course, my practice had learned already about these rare reactions, but I was relieved that providers around the country and the FDA have received the same information.

Through the use of integrated information technologies, it is hoped that different segments of the medical care system will be able to "talk" to one another better and faster, and, in the process, dramatically increase diagnostic accuracy and spot potential errors before they injure patients. For example, some physicians are already using automatic warning systems to alert them to potentially adverse drug interactions or allergic reactions. Even when health care providers administer appropriate medications or treatments, there remain other adverse effects that currently are not efficiently captured, aggregated, and analyzed in ways that could save lives. Among other uses, the NHII will help deliver such alerts in a timely and efficient manner.

The NHII can also deliver other benefits, including enhanced access to consumer health information, peer and support services; greater choice of care; tracking of health histories over a lifetime; and increased accountability for quality and costs. New tools, such as automated reminders and decision-support systems will encourage patient adherence to treatment and health maintenance plans and improve the quality of care. The NHII will also improve community health by taking seemingly isolated events, identifying patterns and trends, and suggesting public health actions to safeguard populations.

A vacation emergency in the not-too-distant future, by Joyce Peters.

When I turned 66 last month, my sister and I took a camping vacation out West. One day as we marveled at a chain of waterfalls, I got severe stomach and chest pains. Luckily, I've subscribed to the Portable Medical Alert System since my first bout of angina five years ago, so I wear patch sensors on my chest and a wrist transmitter with a built-in positioning system. My PMAS sent emergency messages to the closest paramedic team and to my own cardiologist in New York. They both got my vital signs and location. The communications system also linked my doctor to the emergency team. By the time the paramedics reached me, my doctor had sent them relevant parts of my medical history, including previous EKGs. Once at the emergency facility, Dr. Sally Smith took over. She asked my permission to access my online personal health record to get information on previous stomach problems, which didn't show up in my cardiologist's record. I agreed. After a thorough evaluation, including a new EKG for comparison, Dr. Smith told me I probably had viral gastroenteritis. We updated my personal health record at the same time Dr. Smith did hers, and then she discharged me in my sister's care.

The next day I felt much better, but I had lost the written follow-up instructions. No problem. I logged onto my mobile phone and found them where Dr. Smith had entered them the day before: on my personal health home page. My regimen was simple: lots of fluids and watch my diet. The next three days passed without incident, unless you count the elk on the trail.

The day we left, the local paper noted lots of other campers had become sick too. It turns out the local health department has an automated surveillance system that collects anonymous patient data from local health care providers. This system recognized a cluster of tourists with similar symptoms in one part of the park. After a little detective work, they found the culprit. A construction crew had punctured a sewer line, which in turn contaminated a number of wells providing water to park restaurants and other facilities. Come to think of it, my sister and I noticed that the drinking fountains in the park hadn't been working, so I guess park management got the alert.

2. What Stands Between the Present and the Desired Future?

Technology is not a major barrier to making this future a reality.Most of the barriers to an effective and beneficial national health information infrastructure are legal, societal, organizational, and cultural in nature.

Privacy protections. The most significant immediate barrier is the lack of comprehensive privacy protections for personal health information. The proliferation of web sites and systems that facilitate the collection, storage, and sharing of personal health information has outstripped protections for that same information (Goldman, Hudson & Smith, 2000). As part of the Health Insurance Portability and Accountability Act (HIPAA) of 1996, the Department of Health and Human Services proposed a set of regulations to protect the privacy of personal health information in electronic transactions for health care. (HHS 1999; NCVHS 1997) Although these draft regulations represent progress, we still need protections that extend across all the users, technologies, and functions envisioned by the NHII. This level of protection can only be provided by comprehensive Federal privacy legislation. These protections must be buttressed by the implementation of technical solutions, such as encryption, digital signatures, useable audit trails, and authentication mechanisms, many of which are already in use.

Information as both a private resource and public good. As a society, we must reach consensus about how we think about health information and information sharing. There is an emerging agreement that health is determined by many factors, and that improvements in health status require information to flow in a coordinated and controlled manner among appropriate partners - consumers, patients, health care providers and community health officials - and beyond the traditional medical care delivery system. However, health care providers and organizations typically treat patient information as a private resource, rarely used for community health improvement, while patients and consumers have their own individual methods for keeping track of personal information. Rarely do any of these groups consider how individual health information might be used to help others or to understand health patterns beyond households. Nor do individual health consumers often grasp how information about community health issues may help them manage their own health. In addition, community health information systems are not integrated among themselves, much less with clinical and research systems and with those of other communities.

Standards. If information in multiple locations is to be searched, shared, and synthesized when needed, we will need agreed-upon information guardians that can exchange data with each other. These may include gate-keeping systems in homes, provider offices, public agencies, online commercial services, and other third parties. We will also need reliable and valid data collection methods; common vocabularies for personal, clinical and public health information; compatible systems to manage, transmit and protect the confidentiality of information; and standards for interoperability. We must capitalize on technology that allows appropriate and authorized use of data and strips personal identifiers. The concept of "minimally necessary" must be strictly applied to the use of identifiable data. We will need equitable rules of data exchange so that competitors (within or between health care provider systems, health information management companies, or health Web services) will be willing to interconnect and share data. We will need viable business models for information use and sharing that are acceptable to consumers, patients, providers, payers, and society at large. These models should address but not be limited to reimbursement, advertising, and direct consumer purchases.

Quality standards for online information. Because health information is much more than medical care data, the lack of quality standards for online consumer/patient information is currently a major barrier to the full realization of the NHII. Health care professionals, consumers and patients all need reliable guides to high-quality online health resources. These resources include health information and services to enable informed decision making; promote healthy behaviors, information exchange and support, and self-care; and manage demand for health services. As the amount of health activity on the Internet increases, government, professional and private sector oversight will be needed to monitor the online sale of products and services to prevent consumer fraud and reduce the risk of consumer and patient harm.

Technology. Security technology must be implemented to assure that health information can safely travel over the Internet. Other technology challenges include the lack of ubiquitous, interoperable wire/wireless information appliances of different sizes and functions for different users and purposes. New devices that are mobile and integrate multiple modes, including data, text, and voice, and multiple functions, such as information searching, communication, and decision support, will be needed. The Internet must develop the capacity to carry the many different types of content, such as images and sound in addition to text, that are important to health decision making, and it must become more reliable to support all the different types of critical situations, such as medical emergencies and outbreaks of highly contagious diseases, that are typical in health care and public health (National Research Council, 2000).

Costs. Creating the networks, systems, and applications to support the NHII will have to be accomplished as a public/private partnership. It may be misleading to estimate a single dollar figure representing specific, planned investments. Many of the individual technologies are already well under development or deployed in pilot projects. Some health care organizations may underwrite system improvements as part of capital upgrades or as a cost of doing business in a competitive environment. Other services may be supported through direct consumer payments similar to monthly utility or cable TV rates.

Attitudes and practices. Certain shifts in societal and professional attitudes and practices must occur. Health care professionals will need to reach consensus on and accept the contribution of practice guidelines and other knowledge management tools. Public health will need to include in its toolkit integrated data systems; high-quality community-level data; tools to identify significant health trends in real-time data streams; and geographic information systems. Consumers and patients must have confidence the NHII will deliver real benefits. They will need to feel comfortable that an appropriate balance is being struck between their desire to safeguard personal health information and health professionals' need for de-personalized information to protect public health, conduct medical research, and improve health care quality.

Equity. Finally, and perhaps most important, the full potential of the NHII will not be achieved until its benefits can be shared equally by all. People from some racial and ethnic backgrounds and those with lower incomes often carry the heaviest health burdens. Eliminating health disparities is one of the overarching public health goals of the next decade. This means technology and online information and services must be available in all homes and communities. Online resources must be culturally and linguistically appropriate for an increasingly diverse population, and presented in clear and useful formats for all regardless of their education level.

3. Foundations of a National Health Information Infrastructure.

In the last decade, many breakthrough efforts have helped lay the foundation for a national health information infrastructure. Informatics systems for processing administrative and financial information have progressed from stand-alone to networked systems. The promise of advanced computing and telecommunications technology stimulated work on an electronic patient record to facilitate the capture and analysis of health care information. Congress passed the High Performance Computing Act in 1991 to promote work on the technical infrastructure, followed by the Next Generation Internet Act of 1998, and the Networking and Information Technology Research and Development Act of 2000, all of which address the health care sector. The President's Information Infrastructure Initiative of 1993 focused on the deployment of information technology to the home and workplace and included a Health Information and Applications Work Group. Attention to applications for public health produced a path-breaking report, "Making a Powerful Connection: The Health of the Public and the National Information Infrastructure" in 1995. The Health Information and Applications Work Group issued a final report on "Health Care and the NII" and a "Consumer Health Information White Paper" in 1996.

The work of other countries to define and implement their own national health information infrastructures also has produced useful models. Australia established a National Health Information Agreement (NHIA) in 1993, including the Commonwealth, State and Territory health authorities, the Australian Bureau of Statistics, and the Australian Institute of Health and Welfare. The NHIA seeks to improve the quality of health data and information and foster cooperation in the development of a national health information infrastructure. It ensures that the collection, compilation, and interpretation of national information are carried out appropriately and efficiently. The agreement has produced the National Health Information Management Group, National Health Data Committee, National Health Information Model, National Health Data Dictionary, national minimum data sets, and the National Health Information Knowledgebase. [http://www.aihw.gov.au/]

In 1997, Canada created an Advisory Council on Health Infostructure, which issued the 1999 report, "Canada Health Infoway: Paths to Better Health." The Canadian strategy has four goals: empowering the general public; strengthening and integrating health care services; creating the information resources for accountability and continuous feedback on factors affecting the health of Canadians; and improving privacy protection within the health sector. The Infoway builds on existing provincial, territorial, and federal health infostructure initiatives such as the Canadian Health Network, the National Health Surveillance Network, and the First National Health Information System. The Roadmap Initiative was established in 1998, with a budget of $95 million over 4 years, to develop more integrated statistical systems and obtain consensus on the indicators and determinants of health. Canada also launched the Canada Health Infostructure Partnerships Program (CHIPP) a two-year, $80 million, shared-cost incentive program, aimed at supporting the implementation of innovative applications of information and communications technologies. [http://www.hc-sc.gc.ca/ohih-bsi/menu_e.html]

In 1998, the United Kingdom National Health Service released "Information for Health 1998 - 2005: An Information Strategy for the Modern NHS." The strategy commits the NHS to: lifelong electronic health records for every person in the country; round-the-clock on-line access to patient record and information about best clinical practices for all NHS clinicians; genuinely seamless care for patients through GPs, hospitals and community services sharing information across the NHS information highway; fast and convenient public access to information and care through on-line information services and telemedicine; and the effective use of NHS resources by providing health planners and managers with the information they need. Committing 1 billion to this initiative, the government established a new NHS Information Authority that is responsible for developing national products and standards for local use and the availability of high-quality information. [http://www.nhsia.nhs.uk/

4. The Role of the National Committee on Vital and Health Statistics

Recognizing the opportunities and interest in integrated health information strategies, the National Committee on Vital and Health Statistics (NCVHS), which serves as the public advisory body for the Secretary of Health and Human Services on national health information policy, created a Workgroup on the National Health Information Infrastructure (NHII) in 1998. As defined in the Workgroup's official Charge:

The "NHII" is a set of technologies, standards, and applications that support communication and information to improve clinical care, monitor public health, and educate consumers and patients. It is not a unitary database. The broad goal of the NHII is health knowledge management and delivery, so that the full array of information needed to improve the public's health and health care is optimally available for professionals, policy makers, researchers, patients, care givers, and consumers. The NHII as a system should seek to improve and enhance privacy and confidentiality of personal health information. [http://www.ncvhs.hhs.gov/[http://www.ncvhs.hhs.gov/nhichrg.htm]

In October, 1998, the Workgroup presented a Concept Paper to the Department of Health and Human Services. [http://www.ncvhs.hhs.gov/hii-nii.htm] The paper stressed that the information within an eventual health information infrastructure would be diverse, reflecting the array of purposes outlined in the Charge. Multiple stakeholders have a role to play in the NHII's development and maintenance, including public agencies, health care and research institutions, professional and standards organizations, consumer organizations, and the telecommunications and computer industries. The Workgroup subsequently examined the content and functions of an NHII in light of developments in the field and in other countries whose efforts are described above. The Workgroup's current conceptualization of the NHII is detailed in the next sections.

As a complement to the NHII, the NCVHS, the National Center for Health Statistics (NCHS), and the Department of Health and Human Services Data Council have begun to articulate a vision whereby health statistics in the United States will mobilize new capacities and fulfill the potential to promote and protect the country's health in the 21st century. The 21st century vision interim report proposes ten principles for health statistics. The vision is intended to encourage the realization of the NHII, and represent specific health statistics requirements for the community health dimension. Both the 21st Century Health Statistics project and the NHII project will include regional hearings in the Fall and Winter of 2000 to enable individuals, communities, and professionals to contribute to a common understanding of the country's health information needs and articulate opportunities for improvement.

5. A National Health Information Infrastructure

Given the Workgroup's broad understanding of health and its determinants, a national health information infrastructure must serve the public as well as professionals and support informed-decision-making across the full spectrum of health needs and at all levels. The content of the NHII will be varied and complex. It includes clinical, population, and personal data; practice guidelines; biomedical, health services, and other research findings; and consumer health information. Currently, health information is stored in many locations. The NHII seeks to connect that information where links are appropriate, authorized by law and patient permissions, and protected by security policies and mechanisms. In effect, the content moves beyond data to information and, ultimately, to knowledge based on analysis and experience.

Because the NHII exists to serve its users, it can perhaps be best understood from their perspectives. Although there are, of course, a multitude of users, three categories represent key stakeholders: individuals, health care providers, and community health professionals. Each group has information needs that are both distinct and overlapping. They will put in, take out, and manipulate information in ways that are sometimes different, sometimes identical.

Three "dimensions" of the NHII - the personal health dimension, the health care provider dimension, and the community health dimension - illustrate the ways in which content, functions, users, and requirements overlap. The dimensions are not unitary "records" maintained in any single location, although they may include health records. Rather, the dimensions represent virtual information spaces. Each is defined by what it encompasses, who it serves, how it is used, and who has primary responsibility for content and control.

The Personal Health Dimension

The Personal Health Dimension (PHD) of the NHII supports the management of individual wellness and health care decision-making. It encompasses data about health status and health care in the format of a personal health record, but also other information and resources relevant to personal health. It makes possible convenient, reliable, secure, and portable access to high quality individual health and wellness information to improve decision-making by individuals and their health care providers. The PHD will encompass information supplied both by the individual and by his or her health care providers. The information will be protected by mechanisms to ensure the confidentiality and security of personal health information.

Personal Perspective: Me and My Family, by Mary Jones

My birthday. My 50th birthday seemed like a big deal. Although so far I've been pretty healthy, I wondered if big changes were in store for me. My multi-media home information center wished me "Happy Birthday" and gave me some welcoming messages, which made me feel being 50 is okay. I keep my own and my family's health histories in my secure personal health manager program, which periodically sends me health reminders that match my age and health risks. It also shows me information my doctors send after my visits. When I logged on today, I saw the results from my latest allergy tests. There was also a notice that the system would be upgrading its encryption and authentication software next week, and that my doctors and I would be alerted to reverify our log-in information and change our passwords. Anyway, today's reminders urged me to take my calcium supplement more consistently to help prevent osteoporosis and to get another Pap test and a mammogram within the year. There was also a suggestion that I discuss the symptoms of menopause at my next visit.

Just as I was about to log off, the light on my OB-GYN's link started flashing. She was notifying all her patients that she would soon move out of state, so she could practice closer to her aging parents. Now I was faced with finding a new doctor. The task was made easier because I had the name of a highly-recommended physician from my best friend. I ran the gynecologist's name through several of the "doctor-finder" services and read her high performance and personal ratings and decided to make an appointment, especially after I found out she was approved by my insurance provider. So, in one fell swoop, I made my appointment and set up the Pap smear and mammogram tests on line. I even took a "virtual tour" of the new office and forwarded relevant medical records. I decided not to mention my depression last year. It's not relevant, so I'll wait to see if I like the doctor and the practice. My wrist Internet will flash me a reminder a week before my appointment. While online, I also sent out a search for health information for women like me, which I will read tonight.

My daughter. My daughter has asthma, and I currently give her nebulizer treatments twice a day at a maintenance level. I check her lung functions through a peak flow meter twice a day too, and I put the results into my home information center in her personal health record. Today, she seems to have come down with a nasty cold. She is wheezing more, coughing and has a fever. I don't want to take her to the emergency room or even to the doctor if I don't have to. I e-mailed her pediatrician, who asked me to send him her daily lung function readings for the last four months. He e-mailed me later and said that, given the symptoms and her sudden decreased lung function, I should increase the frequency and intensity of her nebulizer treatments. He also asked me to send him the readings for the next few days to see if I need to take her in or increase the medication further. It sure was reassuring to sort all this out.

My dad. I also checked up on Dad, who lives 1000 miles away. He's given me access to his personal health page that he keeps with a secure online service the one that's top rated by consumer watchdog groups. I logged on to look at his recent medical visit and medications. His doctor just changed his blood pressure prescription, and the automatic drug interaction program shows that there should be fewer side effects with his current combination of pills. He keeps a voice-activated medication reminder screen on his kitchen cabinet that tells him which pills he needs to take; in turn, he tells it the pills he has taken so it can keep track throughout the day. He even connected me so the system beeps me if Dad misses a pill. (I think he knows that I like this not just for the medication lapses, but as an unintrusive way to know he's okay.) Because he has respiratory problems, his home page is also set up to show the daily air quality index. Today, the icon was blinking red with a pollution alert for his neighborhood, so I called him. He had seen it and seemed insulted that I didn't give him credit for having the good sense to stay indoors.

What are the Personal Health Benefits of the NHII?

Developments in the NHII can help improve individuals' health status by facilitating health and wellness management, personal health risk assessment, health decision-making, patient-doctor communication, and adherence to medication regimens and care plans. Problems of illegible, disorganized or misplaced information can be minimized. Potential medication errors can be identified and individuals can receive reminders about wellness actions, preventive services, medications, and medical appointments. Personal involvement in health and health care decision-making can be strengthened.

Health care quality will be enhanced when providers have convenient access to the summarized continuum of patient information in multiple types of treatment settings, including the home. The quality and quantity of preventive services will be improved when individuals and their providers receive reminders about periodic preventive care. Patient outcomes will be improved through better understanding, communication, and patient participation in the process of care. Chronic disease management will be strengthened by increased ability to tailor health education to the patient.

What are the Personal Health Functions of the NHII?

The functions include the capture, storage, communication, processing, and presentation of information.

Information Capture

Personal health information in the NHII will come from many different sources. Individuals or their legal guardians will enter into personal health records that information they would want readily available to make personal health decisions or, with their approval, provided to health care workers in the case of a medical emergency. This information includes individual and family health histories, medication or food allergies, medication lists, emergency contact information, health care provider information, and health care proxies or living wills. With the approval of the patient, health care providers could send clinical information to the personal health record after office visits. Individuals may also keep health and wellness information of particular personal importance, such as information about recurring or ongoing health concerns, diet plans, nutritional information, exercise regimens, or smoking cessation plans. Some individuals may routinely capture community information such as local health services or environmental hazard alerts; others may access that information only as needed. The development of widely-adopted health care data standards will allow the personal health record to be compatible with other parts of the NHII, including decision support systems and clinical records, and to interconnect as needed.

Information Storage

The NHII will not create a mega database. Individuals may choose from a variety of mechanisms to store personal health information, including home health information programs, third-party information guardian services, or possibly smart cards. They are likely to keep non-personal health-related information, such as information about wellness, specific conditions, or community health issues, on their own computer or just maintain bookmarked links they can access when needed.

Information Communication

The NHII will provide convenient, reliable and secure access for individuals and others authorized by them to a life-long personal history of health care, risk factors, occupational and environmental exposure, and health status information, across geography and across time. If they choose, individuals can send specific personal health information to health care providers or institutions, such as the results of an EKG or a cardiovascular stress test to a wellness program.or immunization records to schools or camps.

Information Processing

The NHII will include a variety of computer-based decision-support tools that individuals can use to make better informed health-related decisions. For example, expert system software will analyze an individual's personal risk factor profile to provide personalized wellness and clinical preventive care recommendations, such as the need for cancer screenings or immunization booster shots. Medication trackers will automatically screen for drug interactions and medication allergies and will send alerts and dose reminders to individual patients and their health care providers.

Information Presentation

With the patient's authorization, diverse technologies will allow convenient, reliable and secure access to personal health information in a useable, standardized format and in a variety of settings, such as work, school, the gym, or while traveling. Emergency services will be enhanced by rapid access to emergency health information "in the field." Individuals can give clinicians access to personal information at treatment sites, perhaps with the capability for multiple providers at different sites to access the same information simultaneously, such as for group consultations. Ideally, individuals will have access to their own information even in remote or rural treatment sites and other countries. Home health and social services personnel can be given access at a patient's home and possibly at an agency office. The presentation of health information could be in text, graphics, voice, audio, video, and a choice of languages to facilitate rapid and efficient use of personal health information by individuals of any literacy level.

What is the Personal Health Content of the NHII?

Individuals will determine what is the most useful information for their needs. The contents will differ depending upon an individual's age, gender, health history, current health status, and personal choice based on health and wellness concerns. One component will be a personal health record tailored to the individual's needs. For example, a person with diabetes might have serial glycated hemoglobin measurements in their record, while a child's record would contain summaries of well-child visits and immunization history. Standards for a personal health record with a minimum data set and data dictionary will need to be developed so that records have a nationally consistent format that allows individuals to access other parts of the NHII. Content most closely related to health care delivery will overlap significantly with clinical information in medical records maintained by health care providers. Other content is created by the individual through interactive online health risk and self-care applications or "captured" from online resources maintained by diverse hosts for public or even professional audiences. In some cases, the Web site of desired content may just be listed, for access as needed.

Core Elements of the

Personal Health Dimension


A. Personal Health Record

B. Other Elements

C. Elements from the Community Health Dimension

Where Will Personal Health Information be Stored?

There is no single place in the NHII where all content will reside. Although the personal health record component could be stored in one repository - a smart card, the home computer, a third party information guardian service, or a health plan/provider server - the value of the NHII will lie in streamlining the organization of and access to content held in multiple places so that the right information is available for the right person at the right time and the right place. Ultimately, the individual will decide which information will be "captured" and kept under his or her control, which information shared with others, and which information will located and its site URL added to a list of favorites for easy access when needed.

Who Uses Personal Health Information in the NHII ?

Only those persons or organizations authorized by an individual will be able to access or utilize that individual's personal health information. The individual and his or her legal guardian or authorized family members will be the primary users. The individual will authorize his or her health care provider to access specific information in the personal health record component. Individuals could pre-approve certain information in the personal health record to be made accessible through secure technology to emergency services personnel in the case of patient incapacitation, such as unconsciousness. Individuals could also decide to participate in public health surveys by approving the transfer of specific personal health information for community health analyses with protection for security and confidentiality guaranteed.

Privacy, Security and Confidentiality Issues

The strictest attention will have to be paid to protecting the physical security and confidentiality of the personal information contained in and derived from the NHII. Individuals will designate the providers and others they authorize to access specific components of their personal health record. Individuals would be able to designate varying levels of privacy for information contained within their PHD depending upon its sensitivity. Individuals would be able to establish access logs and then be automatically notified, perhaps via e-mail, of all authorized and unauthorized "visits." Individuals could make provisions for the use of non-identifiable personal information for public health assessment. Individuals could also verify whether their personal health information maintained by health care providers, community agencies, and other entities is accurate, complete, and up to date and make corrections as needed.

Conclusion

Advances in the Personal Health Dimension of the NHII will allow individuals to make health care and wellness choices that are better informed and more beneficial for their health. Technologies currently exist that can implement this vision of the PHD. However, to fully realize this vision, a supporting structure of national health care data standards, data security and privacy legislation will need to be in place. Standards for personal health records need to be developed. User-friendly interfaces and cross-platform search engines are needed to permit the integration of information from multiple sources. Mechanisms to promote the quality of online health information resources, especially decision-support tools, need to be developed and implemented. The health care system and individual providers will need to adopt attitudes and practices that encourage patient participation in care decisions, and individuals will have to accept more personal responsibility for their own health.

The Health Care Provider Dimension

The Health Care Provider Dimension (HCPD) encompasses information to enhance the quality and efficiency of health services for each individual. The HCPD includes information captured during the patient care process and concurrently integrates this information with clinical guidelines, protocols and selected information that the provider is authorized to access from the personal health record, along with information from the Community Health Dimension that is relevant to the patient's care. The HCPD centers on the individual's health care patterns. The information is typically encounter-oriented and protected by mechanisms to ensure the confidentiality of each individual's health care information. The HCPD would be relevant in physicians' offices; hospitals; ambulatory care, long term care, and mental health facilities; and home care sites to facilitate continuity of care.

What are the Health Care Provider Benefits of the NHII?

The NHII will help improve the quality of patient care services by providing access to more complete and accurate patient data on-the-spot, around-the-clock. Clinical decision-making will be enhanced by the concurrent availability of medication or care path alternatives, along with warnings, alerts, reminders and information from other dimensions pertinent to diagnosis and treatment over a lifetime of patient care. Automated systems will help reduce adverse drug events by generating concurrent alerts and will facilitate recognition of these and other adverse medical events as they occur. Through the sharing of more complete and accurate information and the use of the most current clinical care plans, improvements in coordination of care among providers, across care settings, and in disease management will occur.

The existence of a HCPD will enhance both quality and efficiency in the health care system by supporting more timely and improved decisions, capturing complete and accurate information for clinical purposes, facilitating the use of derivatives of this information for reimbursement, research, and administrative purposes, and providing better data to track provider performance in terms of quality, cost, and outcomes. These benefits will help contain or reduce costs while enhancing the effectiveness of services. Clinical and population researchers, public health services and health care payors will obtain better and more accurate data from the provider dimension to improve the assessment of best practices, identify risk factors, and evaluate medical performance.

The data shared by health care providers will augment the Community Health Dimension by providing more accurate clinical data to support better patient outcomes analysis, improved services, and more detailed data for population-based and public health research. The data will augment the Personal Health Dimension by providing more consistent and complete documentation of individual encounters of care and medical events that can be summarized for inclusion or reference in the personal health record.

What are the Health Care Provider Functions of the NHII?

The functions include the capture, storage, communication, processing and presentation of information.

Information Capture

The NHII will use state of the art technologies to capture information from all patient encounters in ambulatory, in-patient, long-term care, and home/community settings. Increasingly, information will be captured closer to the point of care. The process must be easy to learn and use so that it becomes a natural part of the health care process. The information should be captured initially for clinical purposes, with derivative use of the data for reimbursement, research, and administrative purposes, and, with appropriate measures described later in the Health Care Provider section, for personal and community health management. Standards for data elements will ensure consistency, compatibility, and communication among providers and across technologies.

Information Storage

The primary record of care will be stored within the operational control of the provider who captures the original health care information. The primary record of care must be stored in a manner that will protect the completeness of the record and the integrity and confidentiality of the data. It must be part of an information system that is capable of providing authorized access seven days per week, 24 hours a day. If health care information is sent some place other than the point of care, the recipient of the information is responsible for protecting the confidentiality of the data.

Information Communication

Members of a health care team and other authorized health professionals will have access to an individual's specific and pertinent health care information. The health care information associated with a specific patient may also be communicated to payors, clinical researchers, and public health entities with appropriate permissions from the patient and appropriate legal protections for privacy, confidentiality, and security. The patient will have access to all health care information in the provider's medical records. With the patient's permission, specific information from patient visits will be placed in the patient's personal health record, which is part of the Personal Health Dimension. All communication of health care information will comply with national standards for data security including encryption and electronic signatures. These communication capabilities are essential to facilitate coordination of care.

Information Processing

The NHII will encompass electronic information systems that can synthesize clinical and other information and generate alerts, warnings, reminders, or clinical guidelines to the provider during the process of patient care.

Information Presentation

Standardization of data elements and formats will enhance the usefulness and exchange of information among different providers. Within these formats, providers will organize the presentation of the information in a manner that facilitates effective and efficient use of the information to provide care. Information must be presented when a provider needs it, in the most relevant medium (voice, text, or image), in the most useful and accessible manner, and at the most convenient location (usually at or near the point of care).

What Will the Health Care Provider Dimension Contain?

The NHII will contain a basic core of information in individual patient records to facilitate the flow of information across the continuum of care for the individual. Although the content of the patient record will vary by site of care and nature of the patient's disease, injury, or health status, standardized terms will be used to permit consistency. The patient record will include health care information covering one or more encounters for an individual. Content of the Health Care Provider Dimension will also come from several other sources. Some patient information will come from the personal health record with authorization from the patient, or directly from the patient, family caregiver, or legal guardian. Other information will come from providers, laboratory or radiology information systems. Additionally, the health care provider dimension will also include appropriate community health information, necessary for full understanding of a patient's health concerns.

Core Content of the Health Care Provider Dimension

A. Patient Record Elements

B. Other Elements That Support Clinical Practice

C. Elements from Community Health Dimension

Depending on the patient, the Health Care Provider Dimension would include additional contextual information necessary for understanding, treating, and planning the care of the patient:

Who Uses the Health Care Provider Dimension?

The HCPD is primarily for health care providers at or near the point of care. Health care providers include physicians, nurses, allied health professionals, and home health care professionals. They will be able to access health care information from whichever location is necessary to provide the highest quality of patient care and achieve the best possible patient outcome. Secondary users include clinical and public health researchers and payors. Individuals will have access to their own medical information and, if they choose, can authorize their provider to send specific information from a visit to their own personal health records.

Where Will Information in the Provider Dimension be Stored?

A monolithic HCPD will not exist. The primary record of care will be stored within the operational control of the provider who captures the original health care information. It may be

held onsite or on the server of a third-party health information guardian. The primary record of care must be stored in a manner that will protect the completeness of the record and the integrity and confidentiality of the data. It must be part of an information system capable of providing authorized access seven days per week, 24 hours per day. If health care information is sent some place other than the point of care, the recipient of the information is responsible for protecting the confidentiality of the data.

Privacy, Security, and Confidentiality Concerns

The NHII will incorporate technologies and practices that enhance the confidentiality and security of personal health information. Access to the patient health record may be restricted by the patient, the data security policies and practices of health care institutions, and/or state or federal laws and regulations. Physicians, nurses, allied health professionals and home health care professionals may have access to essential data in the patient record appropriate to the patient situation.

The confidentiality of health care information will be protected by limiting access to individual health information with the use of technologies such as authorization, authentication, and restricted access by class, role, or location of the user. Confidentiality will be maintained when personal information is communicated to other health care institutions or providers with technologies such as encryption and electronic signatures.

Conclusion

The vision of the Health Care Provider Dimension was outlined in the Institute of Medicine's 1997 study, "Computer-Based Patient Record: An Essential Technology for Health Care." However, many events still need to occur before the vision can be fully realized. Though technology advancements have produced much progress, the problem of incomplete and incompatible standards and terminologies, and security, privacy and confidentiality concerns need to be resolved. The full vision of the Health Care Provider Dimension is evolving with the introduction of new technological solutions, standards, and privacy and confidentiality legislation. The measure of success will be a health care system that enables continuous improvement of clinical processes in an efficient and cost-effective manner.

The Community Health Dimension

The Community Health Dimension (CHD) of the NHII encompasses a broad range of information, including population-based health data and resources, necessary to improve public health. The CHD will include statutorily authorized data in public health systems and the Health Care Provider Dimension. Anonymous data could be used for research or other public health purposes. The CHD will have strict legal and technological safeguards, including appropriate security and permissions, to protect the confidentiality of data from other dimensions.

What are the Community Health Benefits of the NHII?

With improved access to accurate, timely, and comprehensive information, public health professionals will be better able to identify public health threats; assess population health; focus programs and policies on well-defined health problems; inform and educate individuals about health issues; evaluate programs and services; conduct research to address health issues; and perform other essential public health services.

The CHD will bring specific improvements to public health practice such as enhanced reporting systems to identify emerging and ongoing health problems; improved population health data to help characterize the whole population and specific sub-populations; mechanisms to identify health needs of sub-populations who are especially at risk because of social and/or environmental conditions; and expanded potential to identify factors that affect health throughout the life cycle.

The CHD will also improve access to and utilization of a wide range of information essential to monitor and protect the public's health through electronic data interchange and decision-support technologies. As the mission of public health in the United States evolves to include greater emphasis on monitoring the quality of health care services, the CHD will facilitate access to and integration of all information needed to improve the population's health. An integral component of the CHD will be mechanisms to protect the confidentiality of individuals' personal data and to improve the security of public health data.

What are the Community Health Functions of the NHII?

The functions include the capture, storage, communication, processing and presentation of community health information.

Information Capture

The CHD will capture information from conventional sources of public health data, such as vital events, communicable disease surveillance systems, and childhood lead screening and immunization programs. The CHD will also encompass information from less conventional public health sources, for example, the National Spatial Data Infrastructure. Health care providers will send patient encounter information from which all personally identifiable information has been removed for public health monitoring of population health status and health care services. Providers will send personally identifiable information only under strict protocols, for example to track highly contagious diseases or to fulfill other legally-mandated public health responsibilities.

Information Storage

There will not be a single database of public health information. Diverse and separate federal, state, and local information systems will be maintained, with greater integration vertically and horizontally.

Information Communication

The CHD will provide federal, state and local public health professionals with information about trends in health risks, diseases, and other factors affecting community health. Clinicians and the public will be alerted to communicable disease threats and environmental hazards, and they can receive reminders about immunizations, flu shots, preventive health services and other broad-based health care opportunities. Aggregated community health profiles will be available to the public and to community groups. These community health profiles will not contain any individually identifiable data.

Information Processing

CHD data standards will allow the electronic integration of conventional sources of public health data, such as those legally mandated for collection by local and state health departments, along with non-identifiable information from patient encounters. The CHD will include decision-support tools that integrate data analysis and public health practice guidelines.

Information Presentation

The CHD will enable public health workers to access data, analyses, directories, and other information resources and tools from the field as well as in public health clinics and offices. The CHD will also provide useful information in usable and accessible formats to individuals, community institutions such as libraries, and community groups for identifying public health problems and planning public health interventions. The information and its presentation will be tailored to users' specific needs.

What Will the Community Health Dimension Contain?

In the broadest terms, the community itself will be the focus of information within the CHD. The content will focus on the health and health care of community members, community attributes affecting health, community health resources, and broad measures of community health status. These categories of information support a focus on overall community health needs, rather than individuals and disease events

Core Content in the Community Health Dimension

A. Public Health Data

B. Information From Health Care Provider Dimension (with personally identifiable information removed except under legally established public health protocols and strict security)

C. Other Elements

It will be possible to aggregate data within the CHD in various ways, such as city or town, neighborhood, health service area, household, family, or other grouping. Beyond the basic core information, the specific content of the CHD will vary depending if the community of interest is defined geographically, economically, ethnically, or by some other characteristic. The specific unit of analysis of the CHD will also vary and may include individuals, communities, health episodes, or health events. Any of these community units can be analyzed both longitudinally and at a specific point in time. This ability to aggregate and analyze data from diverse sources will enhance the public health response to events such as flu epidemics or outbreaks of food poisoning, for example.

To ensure privacy and confidentiality, data within the CHD will only be linked on an "as-needed" basis for specific projects. The use of personally identifiable information will be subject to legally established public health protocols with strict protections for security and confidentiality. Different approaches will be necessary to protect the confidentiality of each type of community health information. Policies, practices, and technologies designed to address confidentiality and privacy issues are discussed at the end of the Community Health Dimension section.

Who will use the Community Health Dimension?

The primary users of the CHD are public health professionals, community members and community groups. These individuals and organizations have principal roles in decisions and actions to improve community health. Health policy makers, including legislators and staff, population health researchers, Schools of Public Health or similar academic institutions, health care providers, and members of the general public with an interest in population health information will also be able to draw on anonymous and aggregated data in the Community Health Dimension to inform decisions and programs and to advance understanding of health issues. The CHD will be used in such locations as local, state, and federal public health agencies and other pertinent government offices; public and private hospitals and health care clinics; academic and research institutions; libraries and homes.

Access to the CHD will occur only along a carefully constructed and monitored continuum. Access will depend on the specific use and user of information. At one end of the continuum will be access to individually identifiable data by authorized public health workers for such legally authorized purposes as contact tracing for highly communicable diseases or identifying high-risk infants in need of intervention. At the other end of the continuum will be public access to anonymous, aggregated data to identify local public health problems and to set local public health priorities. In the middle of the continuum will be access to some identifiable data governed by protocols already in place and under the authority of groups such as the current Institutional Review Boards approved by the Federal Office for Protection of Research Risks. Access to non-personal community information and other non-sensitive resources would generally not be limited.

Where will Contents of the Community Health Dimension be Stored?

Legal and market place developments that will occur during the evolution of the NHII will dictate its final form and architecture. A monolithic CHD utilized by all public health agencies and other users will not exist. As currently envisioned, components and data sets will reside in multiple locations, separated geographically but accessible to authorized users for approved purposes as if maintained locally. Standards for electronic data exchange will facilitate data flows within the CHD. Data sets will be linked only as needed for specific approved purposes and with appropriate anonymity.

Privacy, Security, and Confidentiality Concerns

The CHD can only exist within a legal and policy framework that maximizes confidentiality, security, and appropriate use. The CHD raises legal, policy, and technical concerns that will need to be resolved before the full range of potential benefits from an integrated public health information infrastructure can be realized. New legal protections to secure the privacy, confidentiality, and security of Community Health Dimension data will be necessary. Issues requiring resolution include development of security and confidentiality protocols covering uses, users, and access modes for personally identifiable information; statistical protocols for aggregated data to protect individual privacy; and protocols to protect individual privacy for interactive applications providing public access to aggregated CHD data.

Conclusion

The Community Health Dimension of the NHII will enable public health providers and policy makers to make better use of existing information in their on-going mission to improve community health and public well-being. The CHD will help reduce the current burden on data providers by reducing duplication and overlap. It will also provide a reliable and accessible means for communities to locate de-identified data so they can more efficiently and effectively identify and solve their own health problems. In addition, it will give federal, state and local public health agencies the tools to improve the overall health of Americans. The CHD will strengthen confidentiality of existing data and provide the strongest possible protections for new data. Access to identifiable data will be limited to those with legitimate, specifically-approved purposes.

6. Next Steps

The potential components and benefits of a national health information infrastructure are already visible. Achieving the full potential of the NHII will require efforts by Congress, government agencies, health care professionals and organizations, technology and communication companies, research institutions, community organizations, and the public.

To help develop a national consensus on the best way to accomplish mutual goals, the NHII project will be joining the 21st Century Health Statistics project in a series of regional hearings in 2000-2001. Individuals, communities, and professionals will be invited to contribute to a common understanding of the country's health information needs and opportunities for improvement. This interim report will be widely distributed and publicly available on the Internet so that suggestions can be gathered. A final report with recommendations will be approved by the National Committee on Vital and Health Statistics, and presented to the Secretary of Health and Human Services, the HHS Data Council, HHS agencies, and Congress in 2001.

7. References

Advisory Council on Health Infostructure, 1999. Canada Health Infoway: Paths to Better Health. Final Report. Ottawa. Health Canada Publications. Available on the World Wide Web at http://www.hc-sc.gc.ca/ohih-bsi

Canada Office of Health and the Information Highway. Canada Health Infostructure Partnerships Program. Retrieved from the World Wide Web April 17, 2000 at http://www.hc-sc.gc.ca/ohih-bsi/whatfund/chipp-ppics/rfp_e.html

Dick, RS, Steen, EB, and Detmer, DE, Eds. 1997. National Academy of Sciences, Institute of Medicine, Committee on Improving the Patient Record. The Computer-Based Patient Record: An Essential Technology for Health Care, Revised Edition. Washington, D.C., National Academy Press.

Durch, JS, Bailey, LA, and Stoto, MA, eds.. 1997. National Academy of Sciences, Institute of Medicine, Committee on Using Performance Monitoring to Improve Community Health. Improving Health in the Community, a Role for Performance Monitoring. Washington, D.C., National Academy Press.

Goldman, J., Hudson, Z., & Smith, R.M. (2000). Privacy: Report on the Privacy Policies and Practices of Health Web Sites. Oakland, CA: California HealthCare Foundation. Retrieved May 11, 2000 from the World Wide Web: http://ehealth.chcf.org/priv_pol3/index_show.cfm?doc_id=33

Kohn, LT, Corrigan, JM, and Donaldson, MS, eds. 2000. National Academy of Sciences, Institute of Medicine, Committee on Quality of Health Care in America. To Err Is Human: Building a Safer Health System. Washington, D.C., National Academy Press.

Lasker, RD, Humphreys, BL, and Braithwaite, WR. 1995. Making a Powerful Connection: The Health of the Public and the National Information Infrastructure. U.S. Department of Health and Human Services, Public Health Service, Washington, D.C.

National Committee on Vital and Health Statistics (NCVHS), 1997. Health Privacy and Confidentiality Recommendations of the National Committee on Vital and Health Statistics, Approved on June 25, 1997, submitted to the Secretary of Health and Human Services June 27, 1997. Available on the World Wide Web at http://www.ncvhs.hhs.gov/privrecs.htm

National Committee on Vital and Health Statistics, 1998. Assuring a Health Dimension for the National Information Infrastructure. A Concept Paper by the National Committee on Vital and Health Statistics, presented to the U.S. Department of Health and Human Services Data Council, October 14, 1998. Washington, D.C. Retrieved from the World Wide Web at http://www.ncvhs.hhs.gov/hii-nii.htm March 20, 2000.

National Committee on Vital and Health Statistics, 2000. Uniform Data Standards for Patient Medical Record Information. (Draft for delivery to the Secretary of Health and Human Services in Summer 2000)

National Health Service. 1998. Information for Health 1998 - 2005. An Information Strategy for the Modern NHS. United Kingdom, NHS Executive. Retrieved from the World Wide Web at http://www.imt4nhs.carelink.co.uk/strategy/full/1.htm

National Research Council, Committee on Enhancing the Internet for Health and Biomedical Applications, 2000. Networking Health: Prescriptions for the Internet. Retrieved May 11, 2000 from the World Wide Web: http://books.nap.edu/catalog/9750.html

U.S. Department of Health and Human Services, 1999. Notice of Proposed Rule Making for Standards for Privacy of Individually Identifiable Health Information, Published November 3, 1999. Available on the World Wide Web at http://aspe.hhs.gov/admnsimp/nprm/pvclist.htm

U.S. Department of Health and Human Services, 2000. Healthy People 2010. Conference Edition in Two Volumes. Washington, D.C., Government Printing Office.

World Health Organization, Definition of Health. Retrieved May 11, 2000, from the World Wide Web at http://www.who.int/aboutwho/en/definition.html.


APPENDIX A


DEPARTMENT OF HEALTH AND HUMAN SERVICES

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS

WORKGROUP ON NATIONAL HEALTH INFORMATION INFRASTRUCTURE

June 2000



John R. Lumpkin, M.D., M.P.H., Chair

Director

Illinois Dept. of Public Health

Springfield, Illinois

Jeffrey S. Blair, M.B.A.

Vice President

Medical Records Institute

Albuquerque, New Mexico

Daniel Friedman, Ph.D.

Assistant Commissioner

Bureau of Health Statistics,

Research and Evaluation

Massachusetts Department of Public Health

Boston, Massachusetts

Richard K. Harding, M.D.

Clinical Professor of Psychiatry and Pediatrics

Vice Chairman, Clinical Services

Neuropsychiatry & Behavioral Science

University of South Carolina

Columbia, South Carolina

Clement Joseph McDonald, M.D.

Distinguished Professor of Medicine

Indiana University School of Medicine

Director

Regenstrief Institute

Indianapolis, Indiana

Barbara Starfield, M.D., M.P.H.

Distinguished University Professor

and Professor of Health Policy and Pediatrics

School of Hygiene/Public Health

The Johns Hopkins University

Baltimore, Maryland

Kepa Zubeldia, M.D.

Vice President, Technology

Envoy Corporation

Kaysville, Utah









STAFF
Mary Jo Deering, Ph.D., Lead Staff

Director of Health Communications

Office of the Secretary, DHHS

Washington, D.C.

Theresa Krol

Health Care Financing Administration

Baltimore, MD

Mike Carleton, Director

Office of Information Technology,

Office of the Secretary, DHHS

Washington, D.C.

Dena S. Puskin, Sc.D., Director

Office of the Advancement of Telehealth

Health Resources and Services Administration

Rockville, MD

Betsy D'Jamoos

Deputy Assistant Secretary for Policy Initiatives, DHHS

Washington, D.C.

Steven J. Steindel, Ph.D.

Centers for Disease Control and Prevention

Chamblee, Georgia





Special acknowledgment is extended to Cynthia Baur and Leslie Hsu for assistance in preparing this report.

1. A list of Workgroup members and staff is given in Appendix A.

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