Senate is flooded with data suggestions

A wide array of industry groups weighs in with ideas for making smarter use of patient information
By Mike Miliard
11:42 AM
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Comments from the Premier healthcare alliance in late August were just the latest in a deluge of opinions and wish lists inundating Capitol Hill, after two senators asked for input on interoperability and data sharing.

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 is 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.

In its recent 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.

Among other stakeholders to submit comments this month were those from CHIME, whose chief recommendations included advancing the availability and utility of data by:

• Developing data standards and robust testing requirements for certified EHR technology and other components of health IT referenced in federal policies;
• Adopting a national patient matching strategy;
• Harmonizing privacy laws to reduce burdens on providers attempting to exchange data

"Patient data-matching continues to be a dangerous and costly process for hospitals and health systems," CHIME argues. "As data exchange increases among providers, patient data-matching errors and mismatches will become exponentially more problematic and potentially dangerous. CHIME calls on Congress to remove the prohibition baring federal regulators from developing and requiring adherence to standards for a unique patient identifier as a means to dramatically enhance the sharing of healthcare data."

In its comments, the National Committee for Quality Assurance pointed to HEDIS – the Healthcare Effectiveness Data and Information Set, stewarded by NCQA – as "a prime example of both what we are and are not able to do with data today."

The widely used quality measurement tool "assesses more than 70 areas where there is strong scientific evidence and consensus on what constitutes high-quality care," NCQA's letter points out. "Public reporting of HEDIS results helps regulators and purchasers hold plans and providers accountable for quality, which drives improvement. We continuously update HEDIS for new scientific evidence and to promote further improvement.

"However, HEDIS can only measure quality where there is strong scientific evidence, broad consensus on its meaning, readily available data to accurately assess and audit, and sufficient numbers for statistical significance. The majority of healthcare services provided today do not meet some or all of those essential criteria for valid quality measurement. For example, the most readily available data is in claims, which often lack the detailed, outcomes-oriented metrics that can be found only with greater effort through medical record review."

EHRs could help address some of these challenges, NCQA argues, "by providing easier access to medical record data. They also can provide additional evidence on effective care by aggregating data on how various treatments affect outcomes in unique populations, such as individuals with differing specific chronic conditions, vulnerabilities, and health disparities."

For its part, the American Hospital Association urged Congress to direct CMS to release certain Medicare data on Part B carriers, Part D prescription drugs, Medicare Advantage enrollees, and inpatient hospital discharges, while still maintaining the privacy and security of individual patient information.

"To accurately assess performance, support risk-based contracting and identify opportunities for improvement, it has become increasingly important to collect and analyze data along every point of the care continuum," wrote AHA Executive Vice President Rick Pollack.

However, he also sounded a cautionary note:

"The demand for data from providers and health care plans is rapidly growing, as the era of 'big data' is at hand," Pollack wrote. "Hospital discharge data sets have been around for decades, while all-payer claims data sets are just beginning to be developed at the state level or through private initiatives. As these resources are expanded, caution must be exercised to ensure privacy and security is maintained.

"Some entrepreneurs and data-mining companies seek access to individual and facility-level data for commercial purposes," he added. "However, we caution that the privacy rules for these relatively new entrants in the health care field are different from those that govern health care providers, and are generally less rigorous."

Other groups weighing in on Wyden and Grassley's request for input include the Bipartisan Policy Center, West Health Institute, Pew Charitable Trusts, the American Medical Group Association and the Healthcare Leadership Council.