News Feature | May 20, 2015

U.S. Health Data Quality Below Par

Katie Wike

By Katie Wike, contributing writer

ONC Behavioral Health Data Pilot

According to Johns Hopkins University researchers, clinical data registries in the U.S. are substandard.

Registries which collect patient outcome data are substandard, according to research conducted by Johns Hopkins University. The research team collected data and determined that, of the 153 registries they studied, many did not monitor their quality. Results of the study were published by the Journal for Healthcare Quality.

“Our results highlight the acute need to improve the way clinical outcomes data are collected and reported,” said senior investigator Marty Makary, M.D., M.P.H., professor of surgery at the Johns Hopkins University School of Medicine in a press release. “Failure to measure and accurately track patient outcomes remains one of the greatest problems in modern health care, curtailing our ability to understand disease, evaluate treatments and make the health-care industry a value-driven marketplace.

“We found it’s the Wild West. With a few notable exceptions, most registries are underdeveloped, underfunded and often arenot based on sound scientific methodology.”

Fierce Health IT reports only 24 percent of those 153 national clinical data registries identified risk adjusted their outcomes. Eighteen percent of those registries indicated they audit their data. Taxpayers funding was present in 26 percent of the registries examined, and only three (2 percent) indicated they publicly shared hospital outcomes data.

“A robust clinical registry can tell doctors in real time what medications work well and which are harming patients, yet the infrastructure to achieve that is vastly under-supported,” says study co-author Michol Cooper, M.D., Ph.D., a surgical resident at the Johns Hopkins University School of Medicine. “The same rigorous standards we use to evaluate how well a drug does ought to apply to the way we report patient outcomes data.”

So what are the qualities of a good registry? Researchers say the following characteristics:

  • Data accounting for differences in patient case complexity across hospitals that allows for meaningful comparisons of outcomes;
  • broad hospital participation;
  • measurement of complications that matter to patients and affect their quality of life;
  • independent data collection that eliminates the bias inherent in self-reporting; and
  • public reporting and open access to hospital performance for taxpayer-funded registries.