To convince patients to share data, engage them in the process


If researchers want patients to contribute their health data to initiatives like the Cancer Moonshot, they must release control of who gets access to the study information and when, says Maurie Markman, M.D., president of medicine and science at Cancer Treatment Centers of America.

Markman, in a post for STAT, says currently there are little to no incentives for cancer patients to share their data. As a physician, she says, she wishes she had more incentives to offer patients to get them to participate.

“Some individuals don’t need any incentive," she says. "They donate their data because they feel a sense of benevolence by contributing to the greater good. Others rightfully worry about the hassle of participating, or privacy, and may need some persuasion.”

And while the National Institutes of Health, in its effort to collect the data of 1 million patients for the Precision Medicine Initiative, is offering participants the chance to give input into the study, that’s not much of an incentive, according to Markman.

Instead, she says, patients should “have the right to access and evaluate the results whether or not they contribute their health information to a repository."

There are a few ways Markman tries to convince patients about the benefits of data sharing, including that they might benefit themselves, that it will help others suffering from cancer, that it will be protected under HIPAA and that such data sharing already has led to advancements in care.

“If we are going to seize this moment to make huge strides against cancer, those who matter most--patients--must be engaged in the work,” she says.

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