Don’t overlook research needs, organization says

The research community does not want to be forgotten as the national health information network is built.

A nonprofit organization whose mission is to speed development of new medicines and treatments has called for greater attention to research needs in the building of the national health information network.

Faster Cures: the Center for Accelerating Medical Solutions, a 2-year-old organization headquartered in Washington, D.C., issued a report Thursday touting the potential benefits of having information about the medical treatment of thousands or millions of patients online and available to researchers.

At the same time, the report said the e-medical records that will hold most of the data need to be designed with researchers’ needs in mind. For example, records may hold doctors’ observations in unstructured text notes, rather than in the form of coded data that can readily be aggregated and mined by researchers.

In addition, patients will need to give consent for their records to be used in research. Mechanisms that ensure the patients will remain anonymous need to be developed and enforced, according to the report, “Think Research: Using Electronic Medical Records to Bridge Patient Care and Research.”

“Obviously, if this were easy, it already would have been done” more widely, said Faster Cures President Greg Simon, a former aide to Vice President Al Gore in the Clinton administration.

Asked about the current federal effort to stimulate the use of health IT, Simon said, “It’s too slow, it’s too cheap and it’s too narrow. Other than that, it’s just fine.” He said the government should use its purchasing power to get doctors treating Medicare and Medicaid patients to use clinical IT that conforms to standards.

But he cautioned that too much attention to standards issues will slow the pace of health IT adoption in the current environment. Without a balanced approach, “the standards debate will expand to fill the time available,” he predicted.

Data in medical records can help in identifying emerging health threats, pointing the way to new treatments, evaluating drug effects over a long period of time, and making clinical trials of new drugs less expensive and easier to undertake, the report said.

Most of the impetus for using health IT currently is based on the belief that the technology can improve care and reduce medical errors while reducing waste and overhead expenses in health care.

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