Information for Health

Information for Health: A Strategy for Building the National Health Information Infrastructure

Report and Recommendations From the National Committee on Vital and Health Statistics




4. CONTRIBUTING ACTIVITIES AND PROTOTYPE PROGRAMS

This section begins by looking at two areas — privacy/ confidentiality and standards — that cut across the three NHII dimensions. Next, programs, activities, and technologies are identified that seek to involve or benefit multiple groups. In each case, the impact of the programs, activities, and technologies would be enhanced if they were part of a comprehensive NHII framework. The section ends with a description of Canadian activities, which provides an invaluable model for the United States.

Crosscutting Activities

Privacy protections and practices. Ensuring the confidentiality and security of personal health information is paramount in the NHII. Privacy policies and practices continue to evolve, particularly for clinical and personal health information. All public health uses of information are already controlled by Federal and State laws and will remain so in the future.

In its June 1997 report to HHS, NCVHS made its privacy recommendations and stressed the need for national legislation to protect the confidentiality of medical records. The privacy regulations issued in 2001 by HHS in the absence of congressional action establish strong protections for individually identifiable health information that is held or transmitted by health plans, providers, and healthcare clearinghouses and sanctions for its misuse. 22 Although the regulations do not go into effect until 2003, and their legal status is being challenged, many healthcare providers and health Web sites are already implementing the regulations in anticipation. Their policies and specific practices vary greatly. Some major organizations have recognized that actions to improve privacy protections are a means to gain the confidence of consumers and patients. Prior to the issuance of the privacy regulations, numerous groups composed of private-and public-sector representatives (many of whom operate consumer-oriented health Web sites) developed their own guidelines for the management of personal information. These guidelines have evolved into standards and an accreditation process for health Web sites. 23

Standardization. In the context of HIPAA, standards development is a long-term, national, public-private initiative that is closely linked to the development of privacy protections. Like privacy activities, standards development cuts across all NHII dimensions. While incomplete, the process is gradually laying a platform for the NHII that will increase in usefulness the more it addresses the information needs in each of the NHII dimensions. The greatest progress so far has been made in the healthcare provider dimension. HIPAA not only establishes standards but promotes consolidation of standards development, updating, and maintenance efforts. HHS has encouraged these efforts by recognizing a group of Designated Standard Maintenance Organizations (DSMOs) to manage the maintenance of the EDI standards adopted under HIPAA. The American National Standards Institute's Healthcare Informatics Standards Board (ANSI HISB) provides coordination and collaboration among the healthcare informatics organizations to promote and facilitate voluntary consensus for national standards. ANSI HISB is supporting the development of the United States Health Information Knowledgebase (USHIK) metadata registry to assist in cataloging and harmonizing data elements across organizations. It also provides a forum for the HIPAA DSMOs to coordinate their efforts to define a common HIPAA electronic signature standard. International organizations are also important. c The International Organization for Standardization's U. S. Technical Advisory Group (ISO US TAG) coordinates the positions of U. S. standard development organizations for representation at the ISO Technical Committee 215's Committee on Healthcare Information Standards. Collaboration of government agencies and private industry within standards development organizations will be essential for creating optimum standards.

In the population health arena, various efforts are under way to improve cooperation between the public health and standards development worlds, with the Public Health Data Standards Consortium taking the lead. Since its establishment in 1999, the Public Health Data Standards Consortium has identified high-priority data needs, developed an educational strategy for public health databases to migrate to existing data standards, and established several workgroups to advance the incorporation of critical public health data into national standards.d

While these efforts do not directly impact the personal health dimension, they will benefit consumers to the extent that all these efforts ultimately contribute to appropriate information exchange across all the dimensions. Standards efforts unique to the personal health dimension are discussed below. The many technical and functional building blocks that standardization is contributing to NHII development were reviewed in Section 3.


The Healthcare Provider Dimension

Private-sector strategies. Although the healthcare sector as a whole lags significantly behind other sectors in integrating informatics and communication technologies, as noted above, some private-sector provider organizations have already made the strategic move toward fully integrated systems. For example, Kaiser Permanente is investing $2 billion for a Web-based system that includes a nationwide clinical information system, patient communication with doctors and nurses for advice, online guidelines and protocols for providers, and all administrative functions. 24 Partners Healthcare System is implementing a system on a virtual private network that includes electronic medical records, patient communication with providers, knowledge resources for doctors, and computerized provider order entry.25 The "100 most wired" hospitals and health systems provide clinicians with access to patient data; offer Internet-based services to patients, clinicians, administrative staff, suppliers, and health plans; and provide online disease management. 26 They appear to be benefiting from better control of expenses, higher productivity, and more efficient use of services. 27

These experiences are helping to clarify not only what works and what doesn't, but also how to measure return on investment. Lessons to date suggest that calculations based on a broad, long-term assessment of returns are more useful than those looking at specific projects or technologies and that while clinical, organizational, and process improvements may be important, so too are market visibility, customer satisfaction, and employee morale.

Collaborative activities. Some healthcare plans and providers are exploring collaborative efforts. Seven health plans formed MedUnite to jointly develop a common Internet-based healthcare business transaction system (www.medunite.com). A group of national and State medical societies established Medem to provide health information for consumers and customized online patient communications for physicians (www.medem.com). Efforts such as these that extend across multiple organizations will be vital components of the NHII, but they also underscore the need for national coordination and leadership.

Enhancing continuity of care and public health outreach: Everyone benefits from automated vaccination records that are part of electronic personal health histories and medical records. Parents can track their children's immunizations over time, even if they see different physicians. Parents and doctors can receive automatic reminders when the next vaccination is due. Local vaccine reporting systems can aggregate anonymous patient data to show immunization rates by individual physician, practice group, and neighborhood. Public health officials can then compare local, State, and national rates, compare rates against CDC guidelines, and target areas for outreach and improvement.

Federal healthcare programs. The Federal healthcare sector, too, is laying the foundation for integrated healthcare and information systems. The Military Health System (MHS) is rolling out its E-Health Project, designed to improve healthcare services and benefits to military personnel and their dependents through the strategic use of the Internet (www.tricareonline.com). The project is designed to provide a common Internet entry point for MHS customers, making it easier for beneficiaries to learn how to access MHS services and benefits. It will also ensure appropriate privacy policies and practices and facilitate portability of benefits. This is the first central effort to develop enterprise-wide business rules and a single, common Internet portal for all U. S. Department of Defense (DoD) patients, providers, and managers. The project is in the early stages of development and will be implemented incrementally.

The U. S. Department of Veterans Affairs' "One VA" initiative is designed to use information technology to improve service to the 26 million men and women who have been honorably discharged from the military and their families. 28 It includes e-mail with providers and other specialists, Internet-based self-service for VA transactions, and many other functions. Several VA hospital systems are among the "100 most wired" listed above, with well-established clinical information systems. Both DoD and VA also have been pioneers in clinical telemedicine. Ultimately, the lessons from these pilot projects can be integrated into the full spectrum of Federal healthcare delivery and health insurance. Their impact on the provision of health care will be felt by private-sector providers as well, through general technology transfer and the purchasing power of the Federal Government.

The Population Health Dimension

Comprehensive reassessment and visioning. NCVHS began a process in 1999 to define a vision for health statistics in the 21st century, working jointly with NCHS and the HHS Data Council. Health statistics are an important aspect of the population health dimension. They characterize the health of a population and the influences on the health of a population — factors that include the environment, genetic and biological characteristics, health care, community resources, and political and cultural contexts. Health statistics are used to design, implement, monitor, and evaluate specific health programs and policies.

The health statistics visioning process has involved discussion groups that met throughout the United States, regional public hearings, expert meetings, forums at professional association meetings, and a National Academy of Sciences workshop. The overall objective was to elicit a broad range of expert opinion from public health and medical professionals on the major trends and issues in population health and their implications for future information needs. The visioning process will result in the publication of a final report in 2002. The report will include suggestions for program planning and criteria for evaluating future health statistics systems. The NCVHS Workgroups on the NHII and on 21st Century Health Statistics have coordinated their efforts. One of the anticipated benefits of these closely related endeavors is that the work products will clarify the interconnections between population health and individual health and those between health and health care, as well as the implications for health information policy.

Local, State, and Federal systems. With current legacy public health systems, information on population health is transmitted from localities to States to the Centers for Disease Control and Prevention (CDC) via stovepipe systems that have evolved separately as a result of categorical congressional funding. CDC has several initiatives to link these self-contained, unconnected systems.

The Health Alert Network (HAN) is a nationwide integrated information and communications system that serves as a platform for distributing health alerts and disseminating prevention guidelines and other information. 29 It also serves as a platform for CDC's bioterrorism initiative and other efforts to strengthen State and local preparedness. The HAN currently encompasses 39 States. When completed, it will ensure high-speed, secure Internet connections for local health officials; capacity for rapid and secure communications with first-responder agencies and other health officials; capacity to securely transmit surveillance, laboratory, and other sensitive data; and an early warning broadcast alert system. The project includes training for public health workers in the use of information technology.

The National Electronic Disease Surveillance System (NEDSS) is a broad initiative using data and information system standards for development of efficient, integrated, and interoperable surveillance systems at State and local levels. 30 NEDSS is built so that data from healthcare providers can be sent to the health department via a secure "pipeline" to protect sensitive data. The focus initially has been on tracking systems for infectious diseases, including emerging infections, and management of possible bioterrorism events. Fifty States have received funding to plan and, in 36 health jurisdictions (35 States and 1 metropolitan health department), to implement NEDSS compatible systems. A NEDSS compatible system for State use, the NEDSS Base System, is also being developed that will incorporate standard messages, a database model, and a platform for other modules. Twenty health jurisdictions have received funding to implement the NEDSS Base System in 2002.

Data definitions. CDC's related Public Health Conceptual Data Model provides the framework for categories of data for public health, especially surveillance. It already has been helpful in representing public health data needs to standards development organizations, specifically to promote the inclusion of the public health perspective in standards development. (This is also the objective of the Public Health Data Standards Consortium.) The model is being harmonized with the HL7 Reference Information Model. In addition to engaging in developmental work with States, standards development organizations, and other stakeholders, CDC has begun integration testing of the NEDSS Base System at the State level. 30


The Personal Health Dimension

Consumer attitudes about health and health care are another important element in the NHII. With health premiums rising steeply and retiree health benefits expected to diminish, consumers will need to take increasing responsibility for their own health and for decisions about appropriate treatments and acceptable outcomes.

Upgrading public health resources for the identification of bioterrorist threats: The Illinois Department of Public Health (IDPH) is notified of a credible threat that plague bacteria may be used in an act of bioterrorism. The IDPH sends out an alert through the Health Alert Network (HAN) to all local health departments. In addition, a similar alert is sent to all hospitals and emergency departments. The signs and symptoms of all forms of plague are incorporated into a software object that is then downloaded to the clinical information systems of clinicians throughout the State. Dr. T.'s system identifies two patients with a matching clinical profile in his practice. After approval by Dr. T., the system notifies the two patients by phone and their home health information system. They agree to come in later that day. That morning Dr. T. sees a patient who appears to have pneumonia and is coughing up blood. He prepares to send the patient to the hospital for x-rays and cultures when his office information systems warn him that this patient's symptoms fit the recently updated public health surveillance profile. He forwards a notice to the public health department and sends the patient into the hospital for further evaluation. The public health laboratory assists in making the diagnosis of a common pneumonia. Patterns of reports by Dr. T. and other physicians are monitored by IDPH as they continue to be alert to a potential terrorist act.


Consumers and patients have been rapid adopters of electronic communications and are using the Internet for information searching, social support, e-mail, health assessments, and other elements of personal health management. (See Table 3.) Patients are also demanding — and are willing to pay more for — online interaction with their healthcare insurers and providers. A recent survey found that 34 percent of e-health consumers would pay extra for the ability to manage their benefits online, and 25 percent would pay more for online interaction capabilities with their physicians. It was also found that 20 to 25 percent of these consumers would switch health plans or physicians to gain such capabilities. 31

In addition to these uses of information for self-care and for medical care decisions, citizen advocacy groups are increasingly using health statistics for their communities to study concerns such as environmental health and health disparities, in order to influence public policy and practices in these areas. Such efforts are engaging stakeholders from all three dimensions. e

Health information quality. One of the most important barriers to the use of information and communications technologies to enhance health is the variable quality of the health information available through the Internet. Consumers are at risk for wasting money on useless products, avoiding needed medical care, or accepting harmful treatments. The U. S. Department of Health and Human Services has addressed this concern by developing healthfinder®, a comprehensive, user-friendly portal to reliable Internet health resources and sites (www.healthfinder.gov). A free service, healthfinder® gives users access to more than 5,000 resources on more than 1,800 topics. The organizations that provide the resources have been reviewed and identified as reliable providers of information for the public. The Web site is coordinated by the Office of Disease Prevention and Health Promotion, which also oversees the HHS Healthy People initiative.


Consumers' Use of Internet-Based Health Information Services for Decisionmaking

More than 50 percent of Americans with Internet access have turned to Web sites to find health or medical information that they use to make decisions about their health.

  • 48 percent of these health seekers say the advice they found on the Web has improved the way they take care of themselves.
  • 55 percent say access to the Internet has improved the way they get medical and health information.
  • 92 percent of health seekers say the information they found during their last online search was useful; 81 percent said they learned something new.
  • 47 percent of those who sought health information for themselves during their last online search say the material affected their decisions about treatments and care; half of these health seekers say the information influenced the way they eat and exercise.
  • 36 percent of those who sought health information for someone else during their last online search say the material affected their decisions on behalf of that loved one.

Source: Fox S and Rainie L. November 2000. The online health care revolution: How the Web helps Americans take better care of themselves. Washington, DC: Pew Internet and American Life Project.

The development of quality criteria for health Web sites is an emerging area that may bring improvements in the reliability of online health information and services. Healthy People 2010 has set a national objective to increase the number of health Web sites that disclose critical elements of operations so that users can assess the quality of the site. Private and nonprofit organizations have developed codes of ethics and standards that will be used to accredit health Web sites. For example, URAC, an accreditation body for healthcare organizations, has developed a set of quality standards for health Web sites. 23 Organizations may apply to URAC to have their Web sites reviewed and accredited. If applied broadly and enforced consistently, quality criteria for health Web sites may provide measurable improvements that will help consumers identify the most appropriate Web resources for their needs.

Improving individuals' ability to self-manage chronic conditions: With the help of a multimedia home information center, a 50-year-old mother, Mrs. M., manages her family's health. She receives automatic alerts and e-mails from her own doctors and her daughter's, and she also receives health information tailored to her specifications. For example, the last time her daughter had an asthma attack, Mrs. M. was able to e-mail information about her daughter's condition to the physician, receive advice within 2 hours, and avoid a trip to the emergency room. Because Mrs. M. is an authorized user for her dad's personal health information manager, she and her father, who lives far away and has emphysema, are simultaneously alerted when the air quality index in his community shows high levels of pollution. Her father also has a voice-activated medication reminder service that he accesses from the information appliance in his kitchen. The reminder service tells him which pills to take when, and he confirms that he has taken the pills as directed. His daughter also can see whether he is taking his medications correctly. The medication reminder service also tracks the need for refills and automatically sends a refill request as needed to the mail order prescription service.


The Canadian Example

As it develops the NHII, the United States is fortunate to have an excellent, comprehensive model in the Canadian Health Infostructure. 32 The purpose, process, substance, and overall level of commitment of the Canadian initiative are highly pertinent examples for the United States. The similarities begin with the basic concept. The 1999 report launching the project explains that the term "the Canada Health Infoway or health infostructure . . . refers not just to the use of information and communications in health . . . [but also] to the health information the technologies create, the policies governing the use of this information, and the people and organizations who create the information and use this infrastructure." The Infostructure is composed of elements provided by provincial, territorial, and Federal health infostructure initiatives. The vision is to "allow these diverse initiatives to complement each other in improving the health of all Canadians." 33

Like the NHII, the Infostructure is a work in progress; however, its implementation is much further along. The initiative has been under development since 1998, with significant and growing support from the Canadian government. The initiative set out four strategic goals: empowering the general public, strengthening and integrating healthcare services, creating the information resources for accountability and continuous feedback on factors affecting the health of Canadians, and improving privacy protections within the health sector. The early years were devoted to consultations with stakeholders around Canada. Specific projects have since taken shape. In some provinces, such as British Columbia where HL7 messages and standardized codes are used for all drug prescribing and in development for linking laboratories, effective infrastructures are developing.

Canadian Infostructure efforts focus on the three areas covered by the dimensions of the NHII. To improve population health statistics, the initiative developed a Health Information Roadmap that provides "an action plan for the 21st century." 34 Its activities have served as an example for the 21st-century health statistics visioning initiative described above. And CDC, in its documents on the Public Health Conceptual Data Model, cites the Canadian Infoway as one of the "inputs" to the CDC model. For consumers, the Canadian Health Network (CHN) was established on the Web, following the U. S. healthfinder® and National Library of Medicine models, as a national, bilingual Internet-based health information service (www.canadian-health-network.ca/customtools/homcc.html). To improve health care, the Canadian government funded an independent corporation, the Canada Health Infoway, Inc. 35 Its objectives are to develop mechanisms to enable consumers to access health information that they can use, to facilitate the work of healthcare providers through technology, and to create a unified network of electronic health records across the continuum of care. It will identify investment opportunities with vendors and systems integrators and accelerate the development and implementation of computerized health information networks.


The Leap to the NHII

The foregoing review of functional and technical building blocks and contributing programs and activities shows that many of the basic components for the NHII already exist and are operating in their own spheres. What they lack is the interconnections that will make them more useful than they are as individual pieces. Now, new energy and resources must be introduced into the system to create a dynamic whole that is greater than, and beneficial to, all the parts. Leadership backed up by resources can bring the pieces together to craft the design of the NHII and bring it into being. We examine the new energy source and the required resources in the next section.

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