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Half of patients in ONC-funded trial chose to conceal sensitive personal health info

Some 50% of the patients who participated in an ONC-funded trial withheld clinically sensitive data from some or all of their healthcare providers. The trial examined the effects of patient access to their own medical records.

The study was designed and conducted by the Regenstrief Institute at Indiana University School of Medicine and Eskenazi Health (formerly Wishard Health Services) in what Indiana University officials said is the first real-world trial intended to answer these questions:

  • Should patients control who can see specific information in their electronic medical records?
  • How much control should they have?
  • Can doctors and other clinicians provide safe, high-quality care when a patient’s preference may deny members of the medical team from seeing portions of the electronic medical record?
  • What is the appropriate balance between individual privacy concerns and healthcare providers’ need for relevant data?

The six-month trial involved 105 patients in an Eskenazi Health primary care clinic and was supported in part by a $1.6 million grant from ONC.

Patients indicated preferences for which clinicians could see sensitive personal health information in their electronic medical records, such as information on sexually transmitted diseases, substance abuse or mental health, and designated what the clinicians could see.

Regenstrief informatics developers created a system in which those preferences guided what information doctors, nurses and other clinical staff could view.

Healthcare providers were able to override patients’ preferences and see any data patients had chosen to hide, if they felt the patient’s care required it.

The trial results are presented and interpreted in five peer-reviewed research papers described in the January 2015 supplement to the “Journal of General Internal Medicine.”

In a release about the trial, Regenstrief President and CEO William Tierney, M.D., principal investigator of the project, said: “We believe it presents an opportunity to shape national policy based on evidence.”

“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,” Tierney said in the release.

Tierney added in the release that while patients are understandably concerned about privacy, doctors often need to know “everything about the patient, even sensitive issues such as recreational drug use or pregnancies or sexually transmitted infections.”

Lucia Savage, ONC chief privacy officer, said in a statement:

“It is important for patients to have confidence in how clinicians and others use their sensitive health information. Patient-centered decision making in electronic health information exchange can inspire trust in health IT and the papers in the journal, along with the Regenstrief study, give us new insights on these issues.”

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