Toward a National Health Information Infrastructure. Interim Report. 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.