Clinical Registries Still the “Wild West”

Amy Krane, Marketing

Surgeons from the Johns Hopkins School of Medicine have published a study in the Journal of Healthcare Quality saying that the state of registries in the US is tantamount to the “Wild West” and that most clinical registries are not set up to make the information they collect useful to patients, physicians and policy makers.

Clinical registries were established to give us the means to learn what works best in terms of health services and disease treatments by compiling outcomes from thousands of hospitals. Currently, there are 153 U.S. clinical registries; on average, each registry tracks 1,160,000 patients across more than 1,600 hospitals.

We don’t doubt the study’s conclusions that there is much room for improvement, but clearly some registries are having a substantial impact. The American College of Surgeons National Surgical Quality Improvement Program (NSQIP) says that participating hospitals “have the opportunity to prevent 25-500 complications, save 12-36 lives, and reduce costs by millions of dollars.” The 20-year old cystic fibrosis registry has been credited with prolonging survival by almost 2 decades. And CMS has included Public Health and Clinical Data Registry Reporting as part of its Proposed Stage 3 rule for Meaningful Use of EHRs.

Dr. Marty Makary, a lead author of the study, shared the following points in an interview with NPR (“Who Keeps Track If Your Surgery Goes Well Or Fails?”):

1. Huge effort put into up front approval for devices/procedures

“Instead of focusing on outcomes, we have a huge upfront effort to approve a new device or a new medication. Once they’re released, nobody’s tracking anything. You have no idea how people are doing with a new medication or a new knee joint.”

2. Lack of incentives dampens investment in tracking outcomes

“Hospitals are not malicious, but there’s no incentive for them, from a business stand point, to chase down their outcomes and measure their performance for internal quality improvement.” (We bet we will see this change with increased dependence on quality measures for reimbursement for Medicare, up to 50% by 2018.)

3. Extreme variation between registries in terms of quality of their data

“The biggest surprise was that [among the 153 registries we identified] there is tremendous variation among the different medical specialties. And the other big surprise was that only 18 percent had any form of auditing to verify their data. Now, on Wall Street we would never accept an 18 percent auditing rate when companies report their earnings.”

4. It’s time to get serious about measurement

“If we’re going to get serious about reining in healthcare inflation, we have to get serious about measuring our performance in health care. Everybody agrees about that. The actual work of measuring patient outcomes is what’s missing.”

Our takeaway:

There is great potential for learning what works and what doesn’t from the data that is being tracked in registries. That’s why QPID is providing software that will help providers populate registries more easily and completely than current methods.

For more information on how QPID is solving this problem read about the Q-Folio solution.


Share this story: