Study Finds Poor Quality Patient Outcomes Data in Clinical Registries

A review of clinical registries determined data collection on patient outcomes are substandard and the information is not useful for patients, physicians, and policy makers, according to a paper published in the Journal for Healthcare Quality.

The researchers found that poor data monitoring and reporting are hurting national efforts to study disease, guide patient choice of optimal treatments, formulate health policies, and track physician and hospital performance.

“Failure to measure and accurately track patient outcomes remains one of the greatest problems in modern healthcare, curtailing our ability to understand disease, evaluate treatments and make the healthcare industry a value-driven marketplace,” senior investigator Marty Makary, MD, MPH, professor of surgery at the Johns Hopkins University School of Medicine, said in a statement.

Dr Makary and colleagues measured outcomes that characterize registries, reflect data quality, and indicate transparency. Overall, they identified 153 clinical registries. Of these, only 16.2% were affiliated with an American Medical Association specialty society, 26.1% were associated with government funding, and only 2% were associated with mandatory public reporting of hospital outcomes for all participating hospitals. Overall, there was a mean of 1693 hospitals per registry and 1,160,492 patients per registry.

“We found it’s the Wild West,” Makary said. “With a few notable exceptions, most registries are underdeveloped, underfunded, and often are not based on sound scientific methodology.”

Less than one-fourth of the registries adjusted their results for differences in disease complexity, without which the data could be misleading and should be interpreted with caution, according to the researchers.

“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,” study co-author Michol Cooper, MD, PhD, a surgical resident at the Johns Hopkins University School of Medicine, said. “The same rigorous standards we use to evaluate how well a drug does ought to apply to the way we report patient outcomes data.”