A national health-information network should run on the Internet. It should also be decentralized, be governed by a public-private organization and be patient-centered to ensure the privacy of healthcare information, according to a report from HHS.
Key challenges to creating a national network remain, however, including finding funding, deciding on data standards and meeting significant privacy concerns.
The 72-page report is a distillation of nearly 5,000 pages of documents received from more than 500 respondents who answered a call for public comments about the form and function of the proposed network, also referred to as an NHIN. The call was issued Nov. 15, 2004, by the Office of the National Coordinator of Health Information Technology. The HHS report was released a week after the Government Accountability Office took HHS to task for not having fleshed out its national health IT proposals enough (See related story, p. 12).
Personnel from 16 government agencies assessed the avalanche of responses that HHS received by the Jan. 18 deadline.
Regional health-information organizations, or RHIOs, which are voluntary, intrastate and interstate cooperatives that develop communications among various healthcare groups, should provide the prototypes for a larger national network, according to responses summarized in the HHS report.
Cited among the "overarching concepts" was the notion that the federal government is "uniquely positioned to advance a NHIN," but that cooperation between government and the private sector was "essential" and there is a need for "some form of implementation and harmonization at the regional level."
Very few respondents said that regions should not come together to form data-sharing organizations, according to David Brailer, the physician President Bush appointed last year to head the national health IT office, and a founding father of the RHIO concept, "but there was agreement you can't do this top-down."
With more than 100 federal employees from all of the principal federal healthcare agencies involved in vetting the public responses, Brailer said summarizing those responses produced an important byproduct.
"I think the biggest impact this has is how it brought (federal government) people together," Brailer said. "It forces that group to decide where they agree and disagree."
The report primarily focused on comments from organizations, but the largest group, 174 of a total of 512 respondents or 34%, was of individual consumers. Health professionals represented 21%; vendors 19%; and different medical, vendor and patient-interest associations constituted 11%. Just 16 provider organizations -- hospitals, clinics, labs, home care, hospice and pharmaceutical firms -- or 3% of the total, responded. The remaining 12% consisted of various smaller segments of the industry.
Privacy was the most important issue with individual respondents; approximately 85% expressed "strong concerns about the potential loss of privacy in the context of a NHIN."