Most patients will allow their data to be used for research — but they want to be asked first, study finds

Though the majority of people are willing to share their deidentified health data with researchers working to improve care delivery, they prefer to be given the opportunity to consent, a recent study from Michigan Medicine found.

Researchers from the Ann Arbor-based medical center surveyed more than 200 cancer patients, 97 percent of whom agreed it is important to conduct medical research using anonymized patient data. Even so, following discussions of the use of that data, two-thirds of respondents still said patients should have the right to opt in or out of data sharing.

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

Dr. Jagsi continued, "Programs trying to facilitate use of data collected in routine patient care encounters for other purposes — even highly worthy ones like improving the quality of care and research — need to be mindful of transparency and clarity in the communication of their goals and activities so patients don't feel violated when they find out how their data was used."

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