Clinical Registry Groups Push for Greater Access to Medicare Claims Data

Medical specialty societies are pushing back on a CMS proposal that they believe will slow down MACRA's goal of improving cost, quality, and outcomes. "To get this [Medicare claims] data and match it to our clinical data is the golden egg," says one physician leader.

While hospital and physician group leaders focused on the broad implications of MACRA (the Medicare Access and CHIP Reauthorization Act of 2015) at a U.S. House committee hearing Tuesday, medical societies are hoping Congress will pay more attention to a tiny section within the proposed rule that they believe could thwart the healthcare industry's ability improve healthcare quality and cost. 

The Physician Clinical Registry Coalition (PCRC), a group of more than 20 medical specialty societies and other physician-led organizations, such as the American Academy of Neurology, Society of Thoracic Surgeons and American College of Emergency Physicians, contends that CMS isn't following the spirit of MACRA that grants access to Medicare claims data.

"We think CMS punted in a way that wasn't consistent with congressional intent," says Rob Portman, who coordinates and represents PCRC.

At issue is valuable Medicare claims data, which qualified clinical data registries were given access to in Section 105(b) of MACRA. Claims data is valuable to medical societies, such as the Society of Thoracic Surgeons (STS), because when it is combined with clinical data, physicians can measure patient care, cost, outcomes, and quality over time.

It gets to the heart of providing value-based care, says Jeffrey Jacobs, MD, FACS, FACC, FCCP, chief of cardiac surgery at Johns Hopkins All Children's Heart Hospital and professor of cardiac surgery at Johns Hopkins University. Jacobs chairs STS's workforce on national databases. He says that even though STS maintains the largest heart surgery database in the world, it has limitations.

"STS collects robust clinical data up until the time of hospital discharge and 30 days after the operation, but Medicare data can tell us if someone's still alive five, 10, or 15 years after an operation," Jacobs says. "It can also tell us how many times they were admitted to the hospital, why, how much it cost, and what medications patients received."

In short, Jacobs says, the databases work best together. And, he says the issue isn't just about data.

"If the government wants to find ways to deliver more cost-effective health care, it would seem to be a no-brainer to allow unfettered access to Medicare data by societies," Jacobs says. "This doesn't just apply to heart surgery, it could apply to neurosurgery or psychiatry."

ResDAC vs. Medical Registries

As far as CMS is concerned, it is granting access to Medicare claims data. In a proposed rule released in February, CMS stated that registries, such as the one maintained by STS, could get Medicare claims data through the Research and Data Assistance Center, known as ResDAC.

It's true that ResDAC is a channel for organizations to get the information in question, but Jacobs and others say ResDAC isn't a true alternative to the Medicare claims data spelled out in MACRA.

"It's difficult to access and the data quality is not as good as it could be," says Jacobs.

Former director of CMS's Center for Medicare Management Jeffrey Rich, MD, agrees. Rich, who is past president of STS and currently serves on the board of directors of Virginia Cardiac Surgery Quality Initiatives (VCSQI), says there are several drawbacks to using data from ResDAC.

"It's cumbersome," he says. "You have to apply, qualify, submit your proposal, ask for the data, then pay a fee. And your file upload capabilities are limited to 50 gigabytes; that's not a lot of data."

In response to CMS's interpretation, Portman wrote a letter on behalf of PCRC pointing out that ResDAC's purpose is for research that uses separate, distinct datasets. MACRA's intent is to link value, cost, quality, and outcomes, which calls for much more dynamic analysis.

"Registries need continuous access to improve the power of their databases," Portman says.

The kind of access that Jacobs and other medical societies want is something that Rich has through VCSQI, a consortium of more than 30 hospitals and cardiac surgery centers in Virginia. The group has worked together since 1996. The 18 VCSQI hospitals share their Medicare claims data with 14 participating cardiac surgical practices.

"Once we get the data back, we do our own aggregation," Rich says. "It's like getting a box of tax receipts at the end of the year to interpret. We hire an IT company, and to do that on annual basis is a quarter of a million dollars. We have a huge infrastructure to do this, but it's really what we need."

By combining Medicare claims data with clinical data, cardiac quality, outcomes, and cost in Virginia have improved. As a result of sharing data, VCSQI developed a standard protocol for reducing post-operative atrial fibrillation. It has also reduced blood transfusions, saving the state at least $44 million. Now the consortium is working on reducing readmissions, Rich says.

"To get this data and match it to our clinical data is the golden egg," he says. "We've proved there is value in doing it, but nobody can do what we do because of the barriers. That's why we pushed Congress hard for access to the data. It's crucial for value-based purchasing."