CATALYST study: Patients with privacy concerns 3 times as likely to withhold details from their doctors

That could have implications for the COVID-19 pandemic because of relaxed HIPAA rules

By Tyler Griesenbrock
CATALYST scientific editor

Published August 7, 2020

Have you ever kept information from a doctor or other health care provider because you were concerned about the privacy or security of your medical record? If so, you are not alone, according to new research at The Ohio State University College of Medicine – and that could have negative implications during the COVID-19 pandemic.

Researchers with CATALYST – the Center for the Advancement of Team Science, Analytics, and Systems Thinking in Health Services and Implementation Science Research – found that patients who were concerned their personal health information could be compromised if their medical records were shared electronically from one health care provider to another were three times more likely to keep information from their health care provider than those who did not share that concern.

That is important because the U.S. Office for Civil Rights has relaxed some protections included in the Health Insurance Portability and Accountability Act, or HIPAA, in response to the COVID-19 pandemic. The Department of Health and Human Services allows business associates such as health care clearinghouses the ability to make good-faith disclosures of medical information for public health and health oversight activities in response to COVID-19.

“While patients must be notified within 10 days, unintended effects of the revised rule are possible,” said Matthew DePuccio, PhD, MS, a post-doctoral researcher with CATALYST and lead study author. “As the COVID-19 pandemic unfolds, health care providers and organizations should help patients understand how their personal health information could be used to monitor the spread of the coronavirus as well as improve the quality of health care delivery.”

The research, published in the Journal of General Internal Medicine under the title “Patients’ perceptions about medical record privacy and security: Implications for withholding of information during the COVID-19 pandemic,” found Black patients were more likely than white patients to withhold information. Patients who were older, married, employed, in good mental health and who had health insurance coverage were less likely to keep information from their providers.

“Taking a proactive approach and discussing the specific ways health care providers are safeguarding patients’ personal health information could potentially allay patients’ concerns about sharing sensitive information,” Dr. DePuccio said.

Dr. DePuccio worked with fellow post-doctoral researcher Gennaro Di Tosto, PhD, as well as Department of Family and Community Medicine faculty members Daniel M. Walker, PhD, MPH, and Ann Scheck McAlearney, ScD, MS, the study’s senior author and Principal Investigator of the studies that provided data for this research.

CATALYST is a center within the Ohio State College of Medicine focused on advancing research and discovery in the delivery of health services across the continuum of care using a team science approach. Directed by Dr. McAlearney, CATALYST provides a hub for health services and implementation science research efforts, which look at how to best implement evidence-based practices to improve overall health. More information about CATALYST is available at

This research was supported by grants from the Agency for Healthcare Research on Quality [Grant# R01HS024091, Grant# R21HS024767, and Grant# P30HS024379]. While this research was funded by the Agency for Healthcare Research and Quality, the study sponsor had no involvement in the collection, analysis, or interpretation of data; in the writing of the manuscript; or in the decision to submit the manuscript for publication.