Opinion: 6 ways to modernize federal health data policy


Creating a national data policy framework for empowered consumer choices.

Healthcare costs are off the charts, making it crucial for consumers to choose the right health plan with the right healthcare provider for their medical needs. That need has helped create a fast track to rising consumerism in healthcare, supported by improved tools via data and information technology, new plan designs, and the growing role of online comparison shopping in our everyday lives. 

Yet, there are obvious signs that the market and governments have been too slow to adapt to the changing dynamics and growing demand for health care transparency.

The confused consumer

Consumers often lack the level of health literacy and access to cost and benefit information needed to make optimal choices. For example, more than 70% of participants in a Carnegie Mellon study failed to pinpoint basic cost-sharing specifics of their health plans, such as the significance of a deductible or the difference between copayments and coinsurance.

Another study, conducted by a Columbia business professor, showed equally startling results, finding that whether a consumer will pick the lowest-cost plan is essentially a toss-up. Only 21% were capable of the task, “a figure not statistically difference from chance.”

These discoveries highlight how inadequate information makes for poor health plan choices. The wrong healthcare choice leads many consumers to overpay for health plans that underdeliver for their particular needs.  

Better access to cost and benefit information can help. Done well, changes to improve transparency can offer a huge pay-off. According to Don Berwick, the former administrator of the Centers for Medicare and Medicaid Services, the lack of transparency and competitive pricing accounted for between $84 billion and $174 billion in wasteful spending last year. While transparency, by itself, will not cure all that ails our uncompetitive healthcare system, it is a good place to start.

An agent of change

Any positive change will require better and more data. Unfortunately, federal data policy suffers from a lack of normalized, trusted, and sharable data across programs and providers. Federal policymakers are compounding the problem by missing opportunities to reform how data is reported, collected and used. Capitalizing on these opportunities will help contribute to better data, better tools, and better markets for consumers making decisions about their healthcare and coverage. For example, federal health programs still allow for information blocking by electronic health record (EHR) vendors. Medicaid and the Children’s Health Insurance Program’s (CHIP) claims and quality data are reported inconsistently across states. Quality measures used in federal programs aren’t relevant to the specialists who must report them. And data are dumped into the marketplace without the critical context that would allow consumers to use those data and make proper decisions.

These problems are big, but solvable. Decision makers pursuing effective management of federal and state programs must increasingly keep up with the latest tools, trends, and capabilities.

Next: Six ways to improve health policy



A national strategic framework

The Clear Choices Campaign is calling for concrete improvements from the Administration to improve health data policy in ways that improve health and lower costs. Among them:

·      Improve quality data. There currently are thousands of quality measures providers report to federal programs at a cost of $15 billion every year. These reports often go into a black box, unused by anyone other than federal workers checking to make sure they were reported. By 2017, the Department of Health and Human Services (HHS) should reform healthcare 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 healthcare data-such as claims data for Medicaid and CHIP-in standardized formats for developers, researchers, and consumers. These data will provide critical insights into cost and quality problems that can then be addressed. 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 healthcare transparency. The Administration should adopt policies that allow entrepreneurs to build upon federal data and programs to create innovative products that empower cost restraint and health improvement.

·      Increase the relevance of data for consumers: HHS should collaborate with providers and employers to present consumers with relevant healthcare 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 wherever they want.

·      Streamline health plan enrollment websites: HHS should continue improving the consumer-facing features and tools on healthcare.gov for plan year 2017. Such tools could include adopting best-in-practice tools from the private sector, including smart sorting, virtual assistants, and drug look-up tools that allow patients to see whether drugs are covered and at what out-of-pocket cost.


In making these changes, the Administration could set the stage for a data-driven health transformation.

When it comes to healthcare decision making, we are certain of two things: one, consumers aren’t currently making optimal choices, and; two, more and better health plan and provider comparison information would help. Armed with the right data and tools, consumers will be able to match their needs to the right health plans and health care providers.


Joel White is president of the Clear Choices Campaign, a multistakeholder advocacy association dedicated to making health markets more transparent, accountable, and consumer-friendly.

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