- Fewer than 8 percent of clinical trial participants felt that security and privacy risks of health data sharing outweighed the benefits, according to a study by Stanford researchers recently published in the New England Journal of Medicine.
Around 93 percent of respondents said they were very or somewhat likely to share their data with university scientists, and 82 percent were very or somewhat likely to share their data with scientists at for-profit companies.
For the study, Stanford researchers surveyed 771 current and recent participants in clinical trials at three US academic medical centers involved in 119 trials. The respondents were participating in community-based trials, such as smoking cessation or diabetes prevention, and hospital-based trials, such as cancer or kidney disease treatment.
The respondents were concerned that health data sharing might make others less willing to enroll in clinical trials (37%), that data would be used for marketing purposes (34%), or that data could be stolen (30%). There was less concern about discrimination (22%) and exploitation of data for profit (20%).
The benefits of health data sharing cited by respondents included making sure participation in clinical trials led to the most scientific benefit possible, supporting learning about diseases, and helping patients learn about problems that affect them.
Survey participants identified other benefits to health data sharing, such as getting answers to scientific questions faster, enabling scientists to check the accuracy of research results by other researchers, discouraging scientists and companies from hiding or distorting clinical trial results, ensuring research dollars are spent as wisely as possible, lowering cost of developing new medical products, and aiding lawyers with lawsuits about unsafe medical products.
The participants were given a 10-page survey questionnaire sent by email or regular mail or distributed in the clinic waiting rooms. The survey development work included use of focus groups, consultation with experts and community advisory boards, and pilot testing.
Completed surveys were received from 771 of the 978 invited participants, a 79 percent response rate.
The likelihood that a respondent would judge that the negative aspects of data sharing outweighed the benefits was significantly higher among those who felt that other people generally could not be trusted and among those who were concerned about the risk of reidentification or data theft. Having a college degree was associated with a lower likelihood of feeling that the risks of data sharing outweighed the benefits.
A low level of trust in people was also a significant predictor of being unlikely to share data with scientists in not-for-profit contexts or drug companies. Low trust in drug companies was a significant predictor of unwillingness to share data with drug-company scientists. Having a college degree was associated with a significantly lower likelihood of refusing to share data with not-for-profit scientists.
The willingness of the respondents to share clinical trial data was greater than that found in previous studies that involved participants’ attitudes toward research use of biospecimens or EHR data, the researchers noted.
They cautioned that the values and concerns of clinical trial subjects may differ from those of the general public, patients in general, or other populations surveyed in biobanking and EHR studies.
Clinical trial participants constitute a small proportion of the people who are eligible for participation and may represent those who are least bothered by data sharing and most enthusiastic about contributing to science.
In addition, the participants familiarity with researchers may result in higher trust levels. Nearly all respondents reported very positive experiences as trial participants.
“Our findings suggest that concerns about trial participants’ attitudes toward data sharing invoked by companies and investigators who caution against it may be exaggerated. Participants perceive data sharing to have many benefits, and most are willing to share their data,” the researchers commented.
“Reaching a world in which the sharing of clinical trial data is routine requires surmounting several challenges — financial, technical, and operational. But in this survey, participants’ objections to data sharing did not appear to be a sizable barrier,” the team concluded.