The NCVHS recommendations in the next section spell out activities and roles for each stakeholder group in building the NHII. The 27 recommendations are directed to 9 categories of stakeholders:
- The Federal Government, including the U. S. Department of Health and Human Services, Congress, and Federal health data agencies
- State and local governments, including State and local data and health agencies
- Healthcare providers, including membership and trade organizations and healthcare organizations
- Health plans and purchasers
- Standards development organizations
- The information technology industry
- Consumer and patient advocacy groups
- Community organizations
- Academic and research organizations
Of necessity, the recommendations are presented sector by sector. However, if they were laid out in a matrix, it would be apparent that the stakeholders' roles are parallel and often interdependent. For example, Federal and State governments as well as providers are advised to create strategic leadership mechanisms for the sector(s) for which they are responsible. All stakeholders are encouraged to collaborate with other organizations and agencies, in addition to carrying out actions that are particular to their domain and expertise (e. g., standards development, advocacy, or research).
The Committee believes, as has been stated, that primary responsibility for coordinating development of the NHII rests with the Federal Government and HHS specifically. This coordination must be both horizontal and vertical — horizontally, across providers, consumers, public health programs, standards development organizations, payers, Government agencies, academic and healthcare institutions, and others, and vertically, across local, State, and national entities. The coordination also must explicitly encompass the personal health, healthcare provider, and population health dimensions rather than focus on any single area.
The Committee recommends that this effort be led by a new, high-level office within HHS. It should have the resources and mandate to coordinate all efforts, internally and externally and in both public and private sectors, and to directly fund strategic crosscutting activities. At the same time, the individual HHS agencies' NHII-related portfolios need to be strengthened and new resources added, under the general coordination of the new office.
Should it accept the recommended leadership role, HHS will need to assess the associated resource needs and integrate them into its budgetary process. Former Assistant Secretary for Health Philip R. Lee, M. D., offered his thinking on funding for the NHII at a regional hearing. 39 In a written supplement to his testimony, he said, "We recommend a ten-year Federal investment in developing the NHII that will require a $14 billion investment and will generate both social and financial returns to the public." f Given the variety of tasks that would be encompassed, such funding would be spread across the White House, existing agencies, nongovernmental organizations, and the new office. This level of commitment is proportional to efforts in Canada and the United Kingdom.
The most important function of funding is to support the new HHS office's pivotal role in coordinating and integrating the activities of the stakeholders and convening them for this purpose. Other HHS activities on the NHII that also need support include information technology research and development; research into effective e-health technologies, applications, practices, and dissemination; investments for information technology deployment in health care and population health; dissemination networks (for the public and professionals) and integrated portals; standards development and implementation; training; data development, management, and integration to implement the vision for 21st-century health statistics; and reimbursement for pilot projects and clinically proven e-health services.
It must be understood that this emphasis on HHS leadership does not suggest a top-down, Government-controlled process. Instead, the recommendations outline a Federal role that promotes the vision and facilitates consensus on direction and process and then helps the collaborators to keep moving as intended, providing support as needed and monitoring progress. The Government is called upon to help set the stage for private innovation, to catalyze change through visioning and standard-setting, and to help build incentives, in addition to performing such traditional governmental functions as providing material support, widening participation and access, and ensuring privacy and confidentiality protections.
Comments in the hearings on the NHII and a review of successful models and best practices in the United States and abroad suggest that several attributes are critical for a collaboration that will build the NHII. In addition to inclusiveness and broad-based participation in decisions, formal mechanisms for reaching compromise on controversial issues will be needed. Stakeholders' motivations vary and sometimes may even conflict; to succeed, the collaboration must account for the full range of interests and motivations. Other important attributes are a clear leadership mandate, an appropriate distribution of responsibility and accountability, and an agreed-upon process and milestones.
While none of the following is a perfect or complete example (and other examples could be cited), three well-documented cases illustrate at least some of these attributes. The first is the Canadian Health Infoway and Information Roadmap, described in Section 4. Those in charge of that multiyear process of consultation, planning, and implementation have gone to considerable lengths to involve multiple stakeholders — providers, consumers, business people, policymakers, and more — at local, provincial, and national levels.
The second example is the National Occupational Research Agenda (NORA) public/ private consensus process used to develop a research agenda for the National Institute for Occupational Safety and Health (NIOSH). 40 Some 500 organizations and individuals outside NIOSH provided input into agenda development, helped identify 21 priorities, and committed themselves to implementing the agenda. Many organizations are using NORA (which stimulated a 133-percent increase in Federal funding in this area) as a model for their own partnership and planning initiatives. Examples of organizations using NORA include the European Agency for Safety and Health at Work, the U. S. Department of Defense, the Japanese National Institute of Industrial Health, the State of Maine, and the Chemical Industry Institute of Toxicology.
The final example of collaboration is the highly decentralized but well-coordinated process used to develop Healthy People 2010, the Nation's third decade-long prevention initiative. Leadership in 28 specific areas was delegated to agencies with primary mandates in those areas who worked closely with relevant professional and voluntary organizations. Regional hearings and online comment opportunities ensured broad input from the general public. The Assistant Secretary for Health provided overall leadership and coordination. Implementation is now equally decentralized, with virtually all States and many localities adapting Healthy People to frame their own health initiatives.
Given stakeholders' varied interests, stages of readiness, and degrees of receptivity to the NHII, the proposed new HHS office will need to use both incentives and requirements to stimulate the development process. In the Committee's view, devising these stimulants should be one of the Federal office's first tasks. Incentives and requirements may be linked as part of a national plan supporting a national health information policy. For example, grants to providers and public health agencies for investment in standardized systems might require that they incorporate standards for sharing personal health information (under strict protocols for de-identification unless mandated by law).
The standardization and administrative simplification process sparked by the 1996 Health Insurance Portability and Accountability Act is an example of this interplay of incentives and requirements. Other incentives might include differential reimbursement to providers who have implemented information systems consistent with NHII information flows, including decision-support tools for providers and patients. Other requirements might include a charge to Federal agencies to produce plans for bringing current programs into consistency with NHII information flows within 5 years.