Industry-consumer coalition Clear Choices (@Clear_Choices), with support from member organizations such as AARP and the National Consumers League, called on the Department of Health and Human Services to put more accurate, intelligible health care data in the hands of health care consumers and stakeholders. The recommendation letter serves 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” said Clear Choices President Joel White. “The health care industry suffers from a lack of normalized, trusted, sharable data, across programs and providers.”

Several issues continue to frustrate 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 example, federal health programs still allow for information blocking by Electronic Health Record vendors and consumers are often misled with confusing jargon and apples-to-oranges comparisons.

In response, Clear Choices is calling for concrete improvements, including:

Improve Quality Reporting Data: By 2017, HHS should strengthen health care quality measurement and reporting — increasing its relevance to consumers and decreasing its burden on providers. Quality measures should account for public health impact, link to improvement in patient outcomes, and address gaps in care.

Make More and Better Data Available to Consumers and Entrepreneurs: HHS should increase the availability of health care data — such as claims data for Medicaid and the Children’s Health Insurance Program (CHIP) — in standardized formats for developers, researchers, and consumers. Such data should be provided for public good as a by-product of taxpayer investments in federal health programs.

Collaborate with Private Sector Data Transparency Efforts: HHS should recognize and encourage further dialogue with private sector third-parties engaged in improving health care transparency. 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: HHS should collaborate with providers and employers to present consumers with relevant health care data. Consumer-facing information should be accurate, valid, evidence-based, and reliable, and should be presented in plain language and in a user-friendly format.

Strengthen Patient Data Access: HHS should establish standards to support comprehensive patient electronic data portability. Patients should be able to take their entire EHR with them when seeing other providers.

Streamline Exchange Enrollment Websites: HHS should continue improving the consumer-facing features and tools on HealthCare.gov for plan year 2017. Such tools could include virtual assistants to help consumers understand the pros and cons of different plan choices.

Clear Choices believes that optimal federal data policy requires a national strategic framework for HHS transparency and public data sharing. 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.

“Consumers need more easy-to-understand and better quality health care data to help them make optimal health decisions for themselves and their families,” said Sally Greenberg, executive director of the National Consumers League. “We urge HHS to give careful consideration to Clear Choices’ recommendations for improving health care transparency.”

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

To access the full HHS Data Sharing Letter, please click here.