Make Federal Health Data Sources More Broadly Available, Healthcare Leadership Council Advises Senators Wyden, Grassley

In Response to Senators’ Request for Counsel on Data Transparency,  HLC Sees Future in which Private, Public Sectors Share Digital Information

HLC president Mary R. Grealy testified on access to federal health data before the House Energy and Commerce health subcommittee.

WASHINGTON –  In response to a request from Senate Finance Committee Chairman Ron Wyden (D-OR) and Senator Chuck Grassley (R-IA), a committee member, for ideas on how to improve healthcare transparency, the Healthcare Leadership Council (HLC) has said improving the quality and accessibility of health data is essential to improve healthcare delivery while reducing health costs.

In a letter to the two senators, HLC president Mary R. Grealy wrote, “We see an opportunity to collectively work toward a future of better health and healthcare by improving accessibility and quality of health data to accelerate progress in medicines, improve the quality of care delivery, reduce costs and create other benefits that we cannot yet imagine.”Making that future a reality, according to Ms. Grealy, means making federal health data more accessible.  She cited several examples, including:

  • Expanding appropriate access to fee-for-service Medicare, Medicaid, Veterans Administration and Department of Defense claims data to all organizations in order to improve care coordination.
  • Basing any data access restrictions on the intended use of the information, not the type of user.
  • Making clinical data from electronic health records available to qualified scientific and medical researchers with appropriate usage restrictions when using patient-level data.

In her letter, Ms. Grealy also called for a national patient privacy framework to replace the “fragmentation of privacy and security standards across state lines.”  She said, in today’s world, laws should facilitate the transmission of data across state lines, not obstruct it.

She also told the Senators that federal policymakers need to be aware that the Health Insurance Portability and Accountability Act (HIPAA) may need to be adjusted to fit “an era in which researchers can harness vast amounts of data to learn from new and different resources (with the patient’s consent) at a rapid pace unlike we have ever seen.”  She said that the authorization components of HIPAA may need to be revised as necessary to “ensure that data can be used effectively in a research setting.”

Ms. Grealy said HLC looked forward to working with the senators to identify barriers standing in the way of using health data to improve healthcare quality and value.