Researchers at Johns Hopkins Medicine in Baltimore found United States clinical registries that collect patient outcome data are substandard and don't have the features patients, physicians and policymakers need, according to a release.
Here are six things to know about the study:
- Researchers found poor data monitoring and reporting, and a failure to measure and track patient outcomes is one of the greatest problems of modern healthcare, according to senior investigator Marty Makary, MD, MPH, professor of surgery at the Johns Hopkins University School of Medicine.
- Registries are like "the wild west" because they are "underdeveloped, underfunded and often not based on sound scientific methodology," said Dr. Makary.
- Researchers assessed 153 United States clinical registries containing on average data on 160,000 patients from over 1,600 hospitals.
- Less than one-quarter of registries adjusted their results for differences in disease complexity.
- Less than one-fifth of registries contained independently entered data.
- 84 percent (98 of 117) of U.S. recognized medical specialties had no national clinical registries.
"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," said study co-author Michol Cooper, MD, PhD, 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."
You can view the study abstract, published in the Journal for Healthcare Quality, here.