The Clear Choices Campaign, an industry-consumer coalition, has called out the U.S. Department of Health and Human Services’ (HHS) data sharing policies, saying the agency aims to improve transparency “in name only.”
In a letter to Karen DeSalvo, M.D., HHS acting assistant secretary, Clear Choices Campaign president Joel White urged HHS to put more accurate, intelligible healthcare data in the hands of healthcare consumers and stakeholders. The organization also outlined a number of recommendations to achieve better healthcare data transparency as a follow-up to a meeting between HHS and the coalition last spring.
"Many of HHS's current data sharing policies aim to 'improve transparency' only in name," White said in the letter. "The health care industry suffers from a lack of normalized, trusted, sharable data, across programs and providers."
In the letter, the coalition states that several issues continue to frustrate optimal federal data policy that would contribute to better data, better tools and better markets for consumers making decisions about their health care and coverage. For instance, certain data are not standardized, computable, usable or available for access across programs, providers and data systems, according to the coalition’s letter. Another barrier is that certain current government policies result in “missed sharing opportunities, data silos or by the release of data that lack critical context to make information usable to consumers.”
“For example, federal health programs still allow for information blocking by electronic health record (EHR) vendors that has served to limit interoperability of EHRs, clinical data sharing and patient health record portability,” White wrote.
Another issue is that consumers, particularly older consumers, become frustrated by confusing jargon and apples-to-oranges comparisons, White stated.
To address the ongoing barriers to data sharing as well as address key questions that HHS raised in the meeting last spring, Clear Choices recommended that HHS adopt the following policies:
- Improve quality reporting data -By 2017, HHS should improve the current system of quality data and streamline quality reporting requirements to reduce provider burden and increase information relevance for consumers, White wrote.
- Make more and better data available to consumers and entrepreneurs - HHS should increase the availability of health care data in standardized formats for developers, researchers, and consumers, for public good as by-products of taxpayer investments in federal health programs. For instance, with regard to Medicaid/CHIP Claims Data, HHS should work with states and/or health plans to submit standardized Medicaid and CHIP claims data to HHS, and authorize its release for analysis by Qualified Entities under the Medicare Access and CHIP Reauthorization Act (MACRA) by 2018.
- Collaborate with private sector data transparency efforts - s HHS establishes more consumer-facing transparency tools, such as the Out-of-Pocket Cost Comparison Tool, the Department should build upon the private sector’s ongoing initiatives, experience, and lessons learned in health care data infrastructure and sharing.
- Increase the relevance of data for consumers – White stated that health information should be presented upfront, in plain language, and in a user-friendly format. Consumers should not be overwhelmed by raw data or complex reports.
- Strengthen patient data access – “HHS should establish standards to support comprehensive patient electronic data portability, including tests to assess vendor compliance with data access requests. Patients should be able to take their entire EHR with them (not just a summary) when changing physicians or seeing subspecialists and other providers,” White wrote.
- Streamline exchange enrollment websites - HHS should improve the consumer-facing features and tools on HealthCare.gov to facilitate better plan choices by plan year 2017
In the letter, White also advocated that federal data policy should require a national strategic framework for HHS transparency and public data sharing. White wrote that including the recommendations above in such a framework would guarantee greater buy in from stakeholders and lead the Administration's transparency efforts toward a consumer-friendly health care environment.
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