Clinical Data Registries Bill Advances In House Despite Opposition

A bill requiring the Department of Health and Human Services to publish recommendations for the development of clinical data registries was approved in a July 30 vote by the House Energy and Commerce Committee, but not without sharp opposition from Democratic members.  In a markup of H.R. 5214, the House committee voted 25 to 18 to report the bill to the House floor. However, Rep. Frank Pallone, Jr. (D-N.J.), the top Democrat on the subcommittee on health, objected to the fact that a hearing was not held on the bill and it did not go through regular order in the subcommittee. More importantly, bill sponsors haven’t done their homework and the bill isn’t needed, he contends.

“This bill wasn’t even introduced until Monday night and there has not been a real opportunity to review this bill,” said Pallone. “I know the chairman of the subcommittee says that it’s bipartisan. I don’t think it’s bipartisan…This thing could be bipartisan if the Republicans were willing to cooperate with us.”  “We all agree that registries are a good thing. In fact, they were a big part of the discussion during the SGR process (Medicare physician payment debate last spring) and we remain committed to our efforts to enact those registry provisions,” he added. “But, this new bill appears to duplicate current public-private efforts that are already in existence…I can’t support a bill that adds more bureaucracy and duplicates what’s already out there.”

According to Pallone, both the American Medical Association--through the National Quality Registry Network (NQRN)--and the Agency for Healthcare Research and Quality, through its extensive public-private registry user guide, “have already done exactly what this bill appears to be seeking to do”—namely, to provide detailed information on how to establish, operate, and use registries for quality and outcomes improvement.  The proposed legislation directs HHS to come up with recommendations on how clinical registries, including outcomes-based registries, may be developed and used to evaluate the impact of care models and methods on the management of chronic diseases based on clinical practice guidelines and best practices....