HLC Newsletter

HLC President:  Medical Progress Will Be Advanced by Opening Up Access to Federal Health Data

In Testimony Before House Subcommittee, Grealy Also Tells Congress it Must Scrutinize Impact of Physician Payment “Sunshine Act” on Health Innovation

WASHINGTON – In testimony before the House Energy and Commerce health subcommittee today, Healthcare Leadership Council president Mary R. Grealy testified that, in order to advance health system improvements and medical research, federal health data should no longer be denied to commercial entities.

Ms. Grealy’s testimony came in a subcommittee hearing on the Energy and Commerce “21st Century Cures” initiative and existing barriers to developing and communicating medical evidence.  The Healthcare Leadership Council is a coalition of chief executives of the nation’s leading healthcare companies and organizations.  An HLC member CEO, Michael Mussallem of Edwards Lifesciences, also testified at the hearing.

“The profit status of an organization should not take precedence over the larger question of how best to conquer disease and improve population health.  Any standard that restricts access to critical federally-held data is, in fact, detrimental to our shared goals for medical and human progress,” she testified.

In her testimony, Ms. Grealy also said that Congress monitor the impact of the Physician Payments Sunshine Act, the provision of the Affordable Care Act under which manufacturers report transactions of value with physicians.  The federal website detailing those payments is scheduled to be launched this fall and Ms. Grealy expressed concern that it may not provide the public proper context on the benefits of physician-industry collaboration.

“This is not a criticism of transparency, which our member companies practice and HLC strongly endorses,” she said.  “We are concerned, though, about transparency without context.  We are concerned that physicians may feel stigmatized by the federal reporting of their interactions with manufacturers in a way that does not communicate the patient benefits of such collaborations…(this) can have a devastating impact not only on innovation, but also on product efficacy and safety.”

Ms. Grealy also testified that Health Insurance Portability and Accountability Act (HIPAA) medical privacy laws are serving the public well, but may need to be reviewed to determine if they are fully suitable in enabling optimal use of today’s health databases.

She said, “We need to keep in mind that HIPAA was created at a time in which policymakers weren’t thinking about the knowledge that could be gained by accessing data residing in large databases and the technological ability to process that data very rapidly.  It may be necessary to adjust the authorization components of HIPAA to ensure that data can be used effectively for research.”

She added that, in order to enable the sharing and collaborative use of data across state lines, it would be preferable to have a single national privacy standard rather than 50 separate sets of state privacy laws and regulations.

Ms. Grealy’s full written testimony can be found here.