"This is important because a simple form could be used in the future to elicit choices from all patients, saving their time without significantly affecting their privacy preferences," said Ohno-Machado. "However, different rates of sharing are expected for opt-in and opt-out of sharing clinical records for research."

A key finding was that a majority of survey participants identified at least one item that they did not want to share with a particular type of researcher (for example, a scientist at another for-profit institution), though they were willing to share other items.


"This finding is important," wrote the authors, "because the item to withhold may not be of relevance to a certain study, but the current all-or-nothing option, if chosen, would remove that patient's data from all research studies."

The authors said the survey's tiered-permission system that allows specific removal of data items or categories proves both doable and appealing to patients, in part because there are differences among individuals in where and with whom they share what.

The findings, said the authors, trigger further questions about the ideal balance between giving patients the ability to choose what portions of their data they want to share for research and with whom and the "greater good," i.e., how fast research can be accelerated for the benefit of all.

"Institutions currently make decisions on sharing on behalf of all patients who do not explicitly decline sharing. It is possible that asking patients directly would increase the amount of data shared for research. On the other hand, it is also possible that some types of research would suffer from small sample sizes if patients consistently decline certain categories of items," Ohno-Machado said.

Co-authors include: Jihoon Kim, Tyler Bath, Paulina Paul and Anh Pham, UC San Diego; Hyeoneui Kim, Duke University; Elizabeth Bell, CSU San Marcos; Xiaqian Jiang, University of Texas; and Kai Zheng, UC Irvine.

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