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Most clinical trial participants find benefits of sharing personal data outweigh risks

Most participants in clinical trials believe the benefits of broadly sharing individual data outweigh the risks, a new Stanford study has found.

With all the justifiable brouhaha over data breaches these days, I was surprised to learn that most participants in clinical trials believe the benefits of broadly sharing individual data outweigh the risks.

So was Michelle Mello, PhD, JD, a Stanford professor of law as well as a professor of health research and policy at Stanford Medicine. Her new research published in The New England Journal of Medicine indicates that despite low levels of trust in Big Pharma, most of those who take part in clinical trials are willing to share their data with drug firms.

Mello and her co-authors -- former Stanford researcher Van Lieou and Steven Goodman, MD, PhD, senior author and professor of medicine and of health research and policy -- surveyed 771 current and recent participants from a diverse sample of clinical trials at three academic medical centers in the United States.

Mello told me that she was somewhat surprised by the survey results, as I wrote in the Stanford Medicine news release: "given the amount of consternation one hears at conferences about data sharing."

"Interestingly, nearly half our sample had experienced a breach of their personal data privacy in another context, yet they were still willing to share their clinical trial data," she said.

The researchers asked about the practice of making personal data collected in medical research widely available after the removal of information that could identify individual participants. Nearly 80 percent of those surveyed responded to the questions -- and fewer than 8 percent of the respondents felt that the potential negative consequences of data sharing outweighed the benefits.

Some 93 percent of those surveyed said they were very or somewhat likely to allow their data be shared with university scientists, and 82 percent were either very or somewhat likely to allow their data to be share with scientists in for-profit companies. The researchers found that the willingness to share was high regardless of the purpose for which their data would be used, unless that purpose was litigation.

Although some researchers and trial funders have worried that participants might object to data sharing as an invasion of privacy, the respondents' greatest concern was that "data sharing might make others less likely to enroll in clinical trials," the authors wrote.

The authors acknowledge there is no turning back from clinical data sharing.
"We are rapidly moving toward a world in which broad sharing of participant-level clinical trial data is the norm," they wrote.

Photo by qimono

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