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Consumer Group Calls on HHS to Improve Health Data Sharing

"Our recommendations would strengthen HHS' data sharing policy in a way that resonates with the public."

- Consumer advocacy association Clear Choices reached out this week to the Department of Health and Human Services (HHS) with recommendations to improve healthcare transparency through publicly shared data. Part of the solution lies in applying the experience of the private sector in healthcare data infrastructure and sharing, the group stated.

Consumer advocacy group Clear Choices suggests that HHS apply the experience of the private sector in healthcare data infrastructure and sharing.

A Feb. 23 letter from Clear Choices President Joel White to Acting Assistant Secretary for Health Karen DeSalvo, MD, points out issues that “continue to frustrate optimal federal data policy that would contribute to better data, better tools and better markets for consumers making decisions about their healthcare.”

Those issues, according to White, include data that are not standardized, computable, usable or available for access across programs, providers and IT systems. He also cited data being released without proper context to make information usable by consumers, as well as burdensome requirements on providers to report quality measures, among other factors.

“To guide the efforts of the administration and various stakeholders toward optimal federal data policy, we believe it is important for HHS to publish a national strategic framework for the department’s transparency policy and public sharing of useful and usable healthcare data,” White wrote.

Clear Choices said such a framework should leverage health data — including claims, clinical care, patient-generated, social media and other data — to build a healthcare system that delivers on the triple aim of improving care, cutting costs and producing better outcomes. The group offered suggestions in the areas of recognizing how healthcare data can empower consumers; ensuring that publicly available data be accurate, reliable and valid; releasing data in context to reduce the chance of confusing or misleading consumers; and making information on providers and payers easy-to-understand, access and use.

Among the group’s recommendations to HHS:

  • By 2017, HHS should streamline quality reporting requirements, striking a balance between process and outcomes measures, but also including measures with public health impact. Subsequently, the agency should “consider ways to appropriately release quality data paired side-by-side with related cost data, which may include claims or encounter data.
  • Increase the availability of healthcare data in standardized formats for developers, researchers and consumers. The group acknowledged the difficulty of such standardization, but maintained that the effort would produce a return on investment for states “through administrative cost reductions, population health improvements and opportunities for states to collaborate with private entities to mine de-identified data to achieve improvements in care, outcomes, cost and [reduced] fraud.”
  • Encourage further dialogue with private-sector entities engaged in improving data transparency, and apply lessons learned in development of consumer-facing tools.
  • Strengthen patient data access by establishing standards “to support comprehensive patient electronic data portability, including tests to assess vendor compliance with data access requests.”
  • Streamline health insurance enrollment websites by plan year 2017 to facilitate better plan choices by consumers.

“If implemented, our recommendations would strengthen HHS data sharing policy in a way that resonates with the public, a feat that has eluded the administration’s efforts to date,” White said in a public statement.



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