Patients Withhold Clinically Sensitive Information Given the Chance

Nearly half of the patients who had access to electronic medical records withheld clinically sensitive information from some or all of their healthcare providers, according to a new study.

Researchers from the Regenstrief Institute, Indiana Univeristy School of Medicine, and Eskenazi Health (formerly Wishard Health Services), conducted a 6-month real-world trial of 105 patients in an Eskenazi Health primary care clinic who were able to indicate which clinicians could access sensitive information in their electronic medical records.

"To the best of our knowledge, a trial like ours has never been attempted before, and we believe it presents an opportunity to shape national policy based on evidence," Regenstrief President and Chief Executive Officer William Tierney, MD, principal investigator of the project, said in a statement. "We learned that patients have widely different opinions of what kinds of their healthcare data they would like visible to different members of their healthcare team and others, such as health services researchers, who might have access to information in their electronic medical record.”

The researchers found that the healthcare providers were concerned about adverse effects on both the quality of care and their relationship with the patient when patients were given the ability to hide information from some doctors and nurses.

In the trial, 49% of the patients withheld information from some or all of their healthcare providers. However, the healthcare providers were all able to override the patients’ preferences and view hidden data. If the providers chose to do so, the program recorded the time, the patient whose chart was being viewed, and the data displayed.

"Without an understanding of how medicine is practiced, a patient may not appreciate why access to their health information is needed by medical team members other than their physician or nurse, for example, a specialist or a clinical lab or unit clerk," Dr Tierney said. "While understandably concerned about privacy, they may not realize how important it is for their medical team to have access to the complete medical record."

The full results of the study will be published in the January 2015 supplement to the Journal of General Internal Medicine.