Most clinical data registries on patient outcomes are substandard and lack critical features to make them useful, say researchers at Johns Hopkins University School of Medicine.
The researchers looked at 153 U.S. clinical registries containing health service and disease outcomes data to determine how effective they were at tracking outcomes. They created a registry of registries to study how healthcare measures its performance. What they found was that poor data monitoring and reporting were ensuring these registries were not aiding the patients, providers, policymakers, and researchers that needed them for guidance.
A strong majority of registries (more than 75 percent) did not adjust results for differences in disease complexity, which researchers say leads to misinterpretation. An even greater number did not include independently entered data, which is supposed to mitigate the bias of self-reported data. Also, they found that most registries did not share their data publicly and a majority of U.S. recognized medical specialties had no national clinical registries.
"Our results highlight the acute need to improve the way clinical outcomes data are collected and reported," senior investigator Marty Makary, M.D., professor of surgery at the Johns Hopkins University School of Medicine, said in a statement. "With a few notable exceptions, most registries are underdeveloped, underfunded and often are not based on sound scientific methodology."
The researchers say that a good registry will improve outcomes by giving providers knowledge in real-time what medications work and what ones do not. They point out examples of good registries, including the National Surgical Quality Improvement Program, maintained by the American College of Surgeons, which they say have generated valuable insights on surgical infections. Also, they mention the National Cardiovascular Data Registry of the American College of Cardiology, which they say led to improvement in the rates of inpatient mortality among participating hospitals.
"These organizations' databases illustrate the power and potential of clinical registries to improve patient outcomes and inform best practices," stated study lead author Heather Lyu, a research fellow at the Johns Hopkins University School of Medicine. "And if we really want to get serious about measuring and improving performance, we need to develop criteria that will help others run similarly successful registries."