Information for Health: A Strategy for Building the National Health Information Infrastructure. Gaps and Barriers

11/15/2001

Testimony at the Committee's hearings on the NHII in 2000 and early 2001 highlighted limitations in leadership, resources, standards, privacy and confidentiality protections, and consensus about appropriate information sharing as major impediments to the development of the NHII. 8-11 It is clear that the chief barriers are human and institutional, not technological. In particular, many speakers focused on the lack of a strong Federal presence to guide the development of the NHII as the most significant gap impeding its realization. The Government is already making, and has made, critical contributions to the development of the information infrastructure — some of them described above. However, these contributions have taken the form of seeding rather than leading the process. What is needed now is a shift in focus from the parts to the whole.

The Committee heard calls for Federal leadership to bring about collaboration between stakeholders in the private and public sectors and among all levels of government. The Federal Government's responsibility for strengthening national privacy protections and supporting the development and implementation of standards also was noted, along with the need for new and expanded Federal funding. This infusion of energy, resources, and direction could help organizations with existing responsibilities for health information work together for maximum benefit. The urgency of improving health communication and information flows has increased greatly since the hearings, but the nature of what is needed, as laid out in this report, remains essentially the same.

Besides strong Federal leadership, the development process needs to engage a broad range of stakeholders. Many sectors, organizations, and population groups were described in the hearings as underrepresented in NHII development to date — not only consumer advocacy and health organizations, providers in small or isolated practices, community organizations, and many public health programs, but also standards development organizations, medical device manufacturers, insurance companies, and employer groups. This situation suggests that while some groups have been working hard to envision and stimulate the NHII, many other stakeholders either have not yet recognized its potential benefits or lack the resources to participate in its development.

Many stakeholders now and in the future will share the cost of building the NHII, but guiding and creating synergy among diverse investments, promoting standards, stimulating growth, and monitoring progress are duties that rest with the Federal Government. This calls for a combination of commitment, money, and vision. The areas where Federal funding is needed are outlined in NCVHS recommendations 1, 2, and 3 below. But money alone will not make the NHII happen; spending will be cost-effective only when it is guided by a national health information policy and implementation plan, also discussed in the recommendations. Without these, uncoordinated spending on information and communication capabilities by individual stakeholders, including the Federal Government, could exacerbate fragmentation and actually make future growth more difficult.

The examples of other countries are instructive in this regard. Over the past decade, Canada, Australia, and the United Kingdom have committed large sums to developing and implementing national information strategies; they have also officially adopted many U. S. standards. In 1998, Canada budgeted Can$ 95 million dollars for its 4-year Roadmap Initiative, and it now budgets more than Can$ 1.5 billion dollars a year for its health information infrastructure (Infoway), with an additional Can$ 500 million in Federal funds committed in 2001 to support a private company, Canada Health Infoway, Inc. (mentioned in Section 4). 36,37 The British government committed more than £1 billion in 1998 to a 7-year initiative to build information and communications applications for its health sector. 38 In each case, the significant spending is tied to a national vision and strategy. In the United States, Federal funding is scattered among multiple health and technology agencies with no overarching plan or coordination. Apart from a few efforts in the private and public healthcare sectors, mentioned in Section 4, there is no sustained financing for information technology investment or e-health service delivery. The series of events unleashed on September 11 particularly highlighted the lack of sufficient Federal funding to build the public health infrastructure all the way to the local level, the front line of public health services.

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