Hearing addresses data sharing, privacy barriers
To advance health system improvements and medical research, federal health data should no longer be denied to commercial entities, according to Healthcare Leadership Council President Mary R. Grealy who testified before the House Energy and Commerce health subcommittee on June 22.
The subcommittee hearing focused on the Energy and Commerce “21st Century Cures” initiative and existing barriers to developing and communicating medical evidence.
“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,” Grealy testified. The Healthcare Leadership Council is a coalition of chief executives of healthcare companies and organizations.
Grealy also said that Congress should 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 for a fall launch and 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.”
Grealy also addressed HIPAA laws, saying "it may be necessary to adjust the authorization components to ensure that data can be used effectively for research." And, 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."