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It Turns Out Clinical Trial Participants Aren't That Worried About Data Sharing


A new study out of Stanford found that patients might not have the concerns that experts think they do.

Here’s a bit of good news for researchers: Clinical trial subjects might not be overwhelmingly concerned if their data is used for further studies—even for commercial ends.

In a new report from Stanford University Department of Health Research and Policy researchers, a strong majority of nearly 800 clinical trial participants expressed that they actually thought data sharing would yield great benefit on a number of fronts, like patient care and medical product development.

The researchers took pains to try to ensure a representative survey cohort. Respondents came from both hospital-based and community-based clinical trials and were 49.9% female, 67.4% white, 14.7% black, and evenly split among income brackets (although more than 75% had some college experience).

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Participants were given a detailed 10-page survey that laid out definitions for terms like “clinical trial data” and “data sharing” in plain English. They were asked to describe their feelings about certain data sharing issues with 1 of 4 designations: not at all concerned, not very concerned, somewhat concerned, and very concerned.

The prompt that issued the most concern was whether participants believed knowledge that data would be shared could make it harder to enroll patients in clinical trials. A majority still expressed ambivalence to that worry, but 9.5% answered that they were “very concerned” and 27.1% were “somewhat.”

The notion that companies might use the data for marketing purposes had the second-highest concern rate, again in the minority: 11.2% very concerned, 22.6% somewhat. The only scenario that drew more “very concerned” rankings was that patient information could be stolen, at 12.9%.

Discrimination and embarrassment if the data were linked back to the patient—2 of the more fretted-over possibilities in the ethics of data sharing—actually elicited the highest “not at all concerned” responses overall, at 50.7% and 57.2%, respectively.

And clinical trial participants were equally indifferent to the idea that “some person or company could make a lot of money developing products using my information,” with 47.7% saying they were not at all concerned about that and another 32.3% saying they were not very concerned (which probably puts a smile on some pharma executives’ faces).

The researchers do believe there are some limitations to their work. First off, there’s a pretty glaring one: The subjects in the study had all submitted to a clinical trial in the first place, meaning if they had grave concerns about the way their data would be used they likely would not have enrolled. The researchers also noted that “respondents’ actual willingness to share their data might be lower than their hypothetical willingness,” although they note that previous research on genetic data sharing indicates a reverse trend.

“Our findings suggest that concerns about trial participants’ attitudes toward data sharing invoked by companies and investigators who caution against it may be exaggerated,” the authors concluded—although the concerns about the use of patient data are probably “worth addressing.”

The study, “Clinical Trial Participants’ Views of the Risks and Benefits of Data Sharing,” was published today in the New England Journal of Medicine.

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