Data Sharing Benefits Outweigh Risks for Clinical Trial Participants

Despite mistrust in pharmaceutical companies and recent high-profile data breaches at hospitals and insurance companies, people who have participated in clinical trials overwhelmingly support the sharing of their data, a new study finds.

For a study published in the New England Journal of Medicine (NEJM), researchers sent clinical trial participants from three academic medical centers a 10-page questionnaire to measure attitudes about data sharing. They found that only eight percent of the patients who responded felt that the risk of sharing their data outweighed the potential benefits. A total of 82 percent said that they perceived that the benefits of data sharing outweighed the negative aspects.

Most of the respondents participated in studies that were related to diabetes, nutrition, weight, and vitamin supplementation. In their questionnaire, researchers included a list of 11 potential risks of data sharing. According to a EHRIntelligence.com analysis of the study, the listed risks included:

  • The possibility that someone could hack the information and identify a clinical trial participant
  • Scientists could use the data to do poor-quality research
  • Participants could be discriminated against if they were linked back to their information
  • Scientists and companies could have less incentive to invest time and money in clinical trials if data is shared

Additionally, investigators found that study participants felt that the risk of data misuse was part of the price they were already paying to participate in a study.

“Our findings suggest that concerns about trial participants’ attitudes toward data sharing invoked by companies and investigators who caution against it may be exaggerated,” researchers wrote, in NEJM. “Participants perceive data sharing to have many benefits, and most are willing to share their data.”

Mary Butler is the associate editor at Journal of AHIMA.

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