Editor’s Desk

Registries Still Not Ready for Prime Time

Frank Diamond
Managing Editor

Well, one of us was wrong and it wasn’t you. That is if you were a bit skeptical about our October 2013 article unveiling a golden age of registries. There’s the headline: “Registries Retooled for Better Data Mining.” There’s the deck: “Simple to create and to extract data from, registries are becoming essential to effective patient and population management.”

Fast-forward to now: According to researchers at Johns Hopkins University School of Medicine, most clinical registries do not measure up to the challenges of modern medicine, lacking both data geared to specialty care and a way for the public to access those data easily

Managed Care hopes people can learn from our mistakes. (Actually, we hope people forget about our mistakes, but since we’ve already begun….)

To offer a meager defense, our 2013 article reflected the desire that registries can truly affect care in a positive way. Why, just months later, in January 2014, David B. Nash, MD, MBA, the founding dean of the Jefferson School of Population Health at Thomas Jefferson University in Philadelphia, told us: “I hope I live to see the day when I can come in in the morning, have my panel of patients on my office laptop, call up my registry function and there will be Dr. Nash’s performance on a population basis comparing me to my local peers, regional, and even a national peer group.”

Bundesarchiv Bild 183-1988-0719-38, Bruce Springsteen, Konzert in der DDR by Bundesarchiv, Bild 183-1988-0719-38 / Uhlemann, Thomas / CC-BY-SA. Licensed under CC BY-SA 3.0 de via Wikimedia Commons - http://commons.wikimedia.org/wiki/File:Bundesarchiv_Bild_183-1988-0719-38,_Bruce_Springsteen,_Konzert_in_der_DDR.jpg#/media/File:Bundesarchiv_Bild_183-1988-0719-38,_Bruce_Springsteen,_Konzert_in_der_DDR.jpgBut, as either Spinoza or Springsteen noted, “But if dreams came true, oh, wouldn’t that be nice….” Dr. Nash is savvy enough to know the difference between hoping to “live to see the day” and “registries are becoming essential.”

Johns Hopkins researchers looked at 73 health services registries, 66 disease registries, and 14 combined registries—and did not like what they saw.

“With a few notable exceptions, most registries are underdeveloped, underfunded and often not based on sound scientific methodology,” senior investigator Marty Makary, MD, said in a statement. Researchers conducted their search between July 1, 2012 to Nov. 1, 2012.

News made even more disappointing in light of the fact that the Affordable Care Act encourages registries, as Don Liss, MD, the senior medical director at Independence Blue Cross, pointed out in our October 2013 article. “One of the requirements of the patient-centered medical home (PCMH) is to maintain registries. They can be fairly simple or they can be complex and require EHRs. It’s a fundamental change in practice for physicians.”

Not yet.

Johns Hopkins researchers found that 98 of the 117 recognized medical specialties “do not have a national clinical registry affiliation, representing a substantial opportunity for scientific advancement and quality improvement in health care.”

Registries work better when the data are risk adjusted and audited. “We found that less than a quarter of registries in our study risk adjusted or audited their data, suggesting the need for better handling of data in reporting outcomes.”