Senate open data request hits a nerve

Industry groups have no shortage of ideas about making smarter use of patient information
By Mike Miliard
11:06 AM

Comments from the Premier healthcare alliance this week are just the latest in a flood of opinions and wish lists inundating Capitol Hill, after two senators asked for input on interoperability and data sharing.

[See also: Grassley, Wyden call for more Medicare claims data transparency]

For the past few years, Democratic Oregon Sen. Ron Wyden and Republican Iowa Sen. Charles Grassley, through their work on the Senate Finance Committee, have been exploring ways to make Medicare claims and quality data more available and useful while still maintaining robust patient privacy protections.

This past June, they put out a call to providers, payers, patients and other healthcare stakeholders looking for ideas about ways to make data more transparent.

Such patient data ia a "growing but largely untapped resource for accelerating improvements in healthcare quality and value," Wyden and Grassley wrote.

"This data has great potential for use by consumers who can be empowered to choose providers that best fit their specific needs; by providers who can improve and deliver higher-quality care; and by payers who can design the most efficient and effective delivery models."

Toward that end, they asked four questions:

  1. What data sources should be made more broadly available?
  2. How, in what form, and for what purposes should this data be conveyed?
  3. What reforms would help reduce the unnecessary fragmentation of health care data? What reforms would improve the accessibility and usability of health care data for consumers, payers, and providers?
  4. What barriers stand in the way of stakeholders using existing data sources more effectively, and what reforms should be made to overcome these barriers?

They may not have been expecting the flurry of comments that have come in as a result. Clearly, the request has struck a chord across the healthcare industry.

In a letter dated Aug. 18, Premier made the case that several data groups should be more broadly available. These include:

  • Fee-for-service Medicare, Medicaid, Veterans’ Administration, and Department of Defense (TRICARE) claims data
  • CMS data collected through the quality reporting programs;
  • Clinical information drawn from electronic health records, "under appropriate circumstances and with appropriate usage restrictions when using patient-level data";
  • Medical, pharmacy and behavioral health information, to allow more effective research within data use agreement limitations;
  • Publicly funded healthcare data, de-identified according to HIPAA standards for research purposes.

In another suggestion, Premier argued that initiatives such as Blue Button+, which aim to "engage and empower individuals and their families as partners in their health through information technology," should be scaled up.

"Premier has found that when healthcare providers are able to access and use crucial, actionable data for analysis and best-practice sharing, it has spurred innovation in healthcare delivery and resulted in significant improvements in the care they provide to their patients," wrote Blair Childs, Premier's senior vice president of public affairs.

"However, significant challenges and barriers exist to accessing the data needed for care and safety improvements," Childs added. "Furthermore, balancing these needs with patients’ right to their privacy has become increasingly critical and challenging in light of the proliferation of healthcare data and the technologies used to collect, store and exchange them. Ultimately, technology, architecture, and information policy must work together to ensure patient privacy and to realize the full societal benefits of healthcare data."

Premier is just the latest in a long line of industry groups weighing in on the senators' request for input.

This past week we reported that, in its letter to Wyden and Grassley, the HIMSS Electronic Health Record Association called for a nationwide patient matching strategy, arguing that lack of one remains one of the biggest barriers to more fluid data exchange.

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