Most Clinical Data Registries in the U.S. Are Deficient, Study Finds

May 4, 2015 in News

Most clinical registries in the U.S. that collect patient outcomes data are “substandard,” with poor data practices and a lack of data sharing preventing the information from being useful for providers, patients and policymakers, according to a Johns Hopkins University study published in the Journal for Healthcare Quality, FierceHealthIT reports (Bowman, FierceHealthIT, 5/1).

Details of Study

For the study, researchers reviewed 153 U.S. clinical data registries that included outcomes data on diseases and health services.

The registries on average contained data on more than 160,000 patients each who received treatment at more than 1,600 hospitals (Johns Hopkins Medicine release, 4/30).

Study Findings

The study found that:

  • About 24% of the registries adjusted patient outcomes data for risk;
  • 18% of registries said they audited their data; and
  • 2% of registries said they made their hospital outcomes data publicly available, even though 26% received taxpayer funding.

Lead researcher Marty Makary said that the current state of registries amounted to the “Wild West” and that most are “underdeveloped, underfunded” and not scientifically rigorous.

Makary added, “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.”

The study authors urged the creation of learning models and standards for registries, “[g]iven the implications of registries to advance medical science and decrease health care waste” (FierceHealthIT, 5/1).

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