Study questions quality of US health data

A new study by Johns Hopkins researchers concludes that most U.S. clinical registries that collect data on patient outcomes are substandard and lack critical features necessary to render the information they collect useful for patients, physicians and policy makers.

Findings of the study, published ahead of print April 24 in the Journal for Healthcare Quality, reveal poor data monitoring and reporting that researchers say are hurting national efforts to study disease, guide patient choice of optimal treatments, formulate rational health policies and track in a meaningful way how well physicians and hospitals perform.

"Our results highlight the acute need to improve the way clinical outcomes data are collected and reported," says senior investigator Marty Makary, M.D., M.P.H., professor of surgery at the Johns Hopkins University School of Medicine. "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."

In addition, the failure to track patient outcomes in a systematic way is tantamount to not measuring the performance of a sector that claims one-fifth of the nation's economy, the research team says.

Clinical registries are databases of patient outcomes developed and maintained by medical organizations and medical specialty groups.

To evaluate the quality of clinical registries, Makary and colleagues say they created "a registry of registries" to study the way the health care industry measures its performance.

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

The investigators assessed 153 U.S. clinical registries containing health service and disease outcomes data. On average, a registry contained information on more than 160,000 patients treated across more than 1,600 hospitals.

Less than one-quarter of registries adjusted their results for differences in disease complexity - information statistically reflective of disparities in illness severity and socio-economic status among patients treated across hospitals. Unadjusted data, the researchers say, could be misleading and should be interpreted with great caution.

Less than one-fifth of registries contained independently entered data - information entered by clinicians other than the ones involved in care - an important principle in mitigating the well-established bias of self-reported data, the researchers say.

Although one-quarter of registries - 40 in total - were funded by taxpayers, only three shared their data publicly. Of note, 84 percent (98 of 117) of U.S. recognized medical specialties had no national clinical registries - a significant gap in the efforts to compare the efficacy of treatments and evaluate the quality of care on a large scale.