- Ninety-three percent of clinical trial participants reported that they would be comfortable with data sharing, allowing universities and other non-profit organizations to access their information and accelerate discoveries, according to a recent survey published in the New England Journal of Medicine.
Eighty-two percent of respondents said that they perceived the benefits of data sharing outweighed the negative aspects, while just eight percent said that the potential negative aspects overshadowed data sharing advantages.
The research team noted that sharing participant-level clinical trial data has become standard in recent years, citing efforts from the National Institutes of Health and other organizations to increase data accessibility.
Previous research has highlighted the benefits of participant data sharing, which include preventing inaccurate reporting of results and facilitating innovations in medicine.
However, some researchers are hesitant about broad data sharing, with many concerned that participants’ privacy won’t be adequately protected, or that potential privacy threats will decrease clinical trial participation.
Although researchers and sponsors of clinical trials have voiced their opinions on data sharing, the researchers point out that it is unknown whether participants share their concerns.
To gain an understanding of participants’ views on data sharing, the team surveyed 771 current and recent clinical trial participants from three academic medical centers in the US.
A total of 93 percent of respondents said they were either very (69 percent) or moderately (24 percent) willing to share their clinical trial data with scientists in universities and other non-profit organizations.
While respondents appeared to have less trust in for-profit entities, such as drug and health insurance companies, the majority of participants (82 percent) said they would allow their data to be shared with these organizations.
Additionally, strong majorities of participants (67 to 82 percent) believe that data sharing will yield a great deal of benefits. In contrast, less than 10 percent of respondents said they were very concerned about potential risks of data sharing, and less than one-third said they were very or somewhat concerned about the risks.
The most prevalent perceived risk of data sharing was that it may deter people from enrolling in clinical trials, with 37 percent of respondents expressing this concern.
This differs from what many researchers and industry sponsors believe are the most critical potential risks of data sharing, which can include reidentification or discrimination.
When asked what they perceive to be the greatest benefits of data sharing, the most popular choices were ensuring that people’s participation leads to scientific benefit (18 percent) and helping to get answers to scientific questions faster (17 percent).
The researchers also noted that participants’ willingness to share data varied little according to the purpose for which it would be used.
Respondents did not show any significant differences between uses that would benefit them directly and uses for making new discoveries. In fact, a dominant theme among respondents was the need to help others as much as possible through clinical trial research. Many expressed confidence in the de-identification of data.
These findings echo those of a study conducted in 2014, which found that 94 percent of patients would be willing to share their data if they believed it would improve care.
The results of this study also align with a previous NPR-Truven Analytics Health survey, which found that just over half (53 percent) of Americans believe health data sharing for research purposes is acceptable.
The researchers concluded that while sharing clinical trial data does come with several significant challenges, the results of this study show that the pervasive concerns of participants are not as major as some may believe.
“Reaching a world in which the sharing of clinical trial data is routine requires surmounting several challenges — financial, technical, and operational,” the team said.
“But in this survey, participants’ objections to data sharing did not appear to be a sizable barrier.”