Sales and Marketing: Facts & Figures

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Less than 8 percent of respondents to a recent research study of clinical trial participants felt that the potential negative consequences of data sharing outweighed the benefits. A total of 93 percent were very or somewhat likely to allow their own data to be shared with university scientists, and 82 percent were very or somewhat likely to share with scientists in for-profit companies. Willingness to share data did not vary appreciably with the purpose for which the data would be used, with the exception that fewer participants were willing to share their data for use in litigation. The respondents’ greatest concerns were that data sharing might make others less willing to enroll in clinical trials (37 percent very or somewhat concerned), that data would be used for marketing purposes (34 percent), or that data could be stolen (30 percent). Less concern was expressed about discrimination (22 percent) and exploitation of data for profit (20 percent).

“Most of the clinical trial participants in our study believed that the benefits of data sharing outweighed the potential negative aspects and were willing to share their data,” wrote the authors of the study called “Clinical trial participants’ views of the risks and benefits of data sharing.”

“Their willingness to share was high regardless of the way in which the data would be used, with the exception of litigation, and it extended to uses that involved no prospect of direct benefit to themselves or their family members. Despite low levels of trust in pharmaceutical companies, most trial participants were willing to share their data with them.”

 

Source: “Clinical trial participants’ views of the risks and benefits of data sharing,” by Michelle M. Mello, Ph.D., Van Lieou, and Steven N. Goodman, M.D., Ph.D.