The nascent Nationwide Health Information Network should be set up to conduct clinical research, says FasterCures, a Washington-based nonprofit think tank and advocacy group.
The goal of the federally-funded NHIN is to make patient health information available electronically whenever a patient needs health care. This should help doctors provide better care and avoid ordering duplicate services and lab tests.
But the NHIN should also be used to identify and verify effective treatments, concludes a report based on a meeting of FasterCures, the Agency for Healthcare Research and Quality, and the National Institute of Healths National Center for Research Resources.
“EHRs [electronic health records] could speed the discovery of new therapies if researchers had access to the data contained in them,” the report said. “However, there have been few opportunities to engage in discussion about ensuring that clinical research is an integral part of an NHIN architecture.”
Carolyn Clancy, director of the AHRQ, warned of tensions between protecting patients privacy and contributing their data for research. Nonetheless, the report describes ways to include a research component into the NHIN.
In particular, the NHIN could be used to monitor the effects of approved drugs. Though drug companies are supposed to conduct post-marketing surveillance (also called Phase IV trials) once their drugs enter the market, such monitoring is difficult and often inadequate.
However, if the NHIN was designed for such a function, both pharmaceutical companies and patient safety would benefit because problems associated with patients taking new medication could be recorded more-or-less automatically, the report said.
Drug companies currently spend as much as $1 billion a year for such monitoring, according to the report. The NHIN could decrease this spending and also provide more complete data about a drugs risks and benefits.
The NHIN should also be designed for broad-based health surveillance using information from EHRs, the report said. This capability could also identify the best candidates for experimental treatments, making research on such drugs faster and more efficient.
The report said that there was “broad agreement” among attendees on how ensure that the NHIN incorporated the needs of the clinical research community, as well as the necessity of protecting patient privacy. Views represented in the report include those from leaders of clinical research and academics, representatives of the federal NHIN effort and RHIOs (regional health information organizations), patient groups, health IT vendors, biopharmaceutical companies, community health providers, state and local governments, and public health officials.
The NHIN is in the very early stages. Last year, the federal government awarded contracts worth $18.6 million to four consortia to develop prototypes of the NHIN.
The goal of the contracts was to establish an appropriate architecture for the system by developing functional requirements and security approaches as well as identifying needed standards for creating secure health information exchange in different health care markets.
These consortia should announce their results in January 2007. Proposals for additional trial implementations are expected to be solicited in spring 2007.