Cancer Patients Want to Give Consent Before Their Data is Used

A new study published in the Journal of Clinical Oncology evaluated the attitudes of cancer patients about how their deidentified patient data are used.

“What we heard was a resounding sense that people want to be able to control their data,” said lead study author Reshma Jagsi, MD, D.Phil., deputy chair of radiation oncology and director of the Center for Bioethics and Social Sciences in Medicine at the University of Michigan, in a press release.

For the study, researchers employed democratic deliberation sessions. Patients were told why and how data are used, and then participated in small-group discussions about the benefits and drawbacks of deidentified data usage for research. All patients filled out three surveys: at baseline, immediately after deliberation, and at one-month follow-up.

For Cancer Patients, Opinions on Data Change

Final analysis included response from 217 cancer patients (67.3% were female) from four sites; 21.7% of patients were black, and 6.0% were Hispanic. The most significant changes in perception after patients deliberated pertained to the use of deidentified medical-record data by insurance companies. At baseline, 79.5% of patients said they were comfortable with it if it was to make sure that patients received recommended care; after the group discussion, 72.3% of patients felt this way. Patient perception on the use of deidentified data for the purpose of eligibility for coverage of reimbursement changed significantly from baseline (50.9%) to after discussion (24.9%).

At baseline, 82.2% of patients said it was of high importance that doctors receive permission at least once to use deidentified medical-records data for future research. Immediately after discussion, this decreased to 68.7%, and at final follow-up, it increased again to 73.1%.

Outcomes varied by race, the authors observed: “At follow-up, non-Hispanic whites were more likely to consider it highly important to be able to conduct medical research with deidentified electronic health records (96.8% v 87.7%; P = .01) and less likely to consider it highly important for doctors to get a patient’s permission each time deidentified medical record information is used for research (23.2% v 51.6%; P < .001).”

Obtaining results from diverse populations is significant, according to Dr. Jagsi.

“Including data from diverse patient populations is crucial for quality improvement and discovery,” she said. “At the same time, we do not want patients to feel they gave their information for one purpose and—albeit with good intentions—we are using it for another purpose. Policies around learning health care systems must be grounded in and respectful of public opinion if we are to realize the great promise of big data in health care.”

In their paper the researchers concluded, “This research confirms that most patients wish to be asked before deidentified medical records are used for research. Policies designed to realize the potential benefits of learning health care systems can, and should be, grounded in informed and considered public opinion.”