Toward a National Health Information Infrastructure. Interim Report. What Stands Between the Present and the Desired Future?

06/20/2000

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.