A Survey of Research Participants’ Privacy-Related Experiences and Willingness to Share Real-World Data with Researchers

Background: Real-world data (RWD) privacy is an increasingly complex topic within the scope of personalized medicine, as it implicates several sources of data. Objective: To assess how privacy-related experiences, when adjusted for age and education level, may shape adult research participants’ willingness to share various sources of real-world data with researchers. Methods: An electronic survey was conducted in April 2021 among adults (≥18 years of age) registered in ResearchMatch, a national health research registry. Descriptive analyses were conducted to assess survey participant demographics. Logistic regression was conducted to assess the association between participants’ five distinct privacy-related experiences and their willingness to share each of the 19 data sources with researchers, adjusting for education level and age range. Results: A total of 598 ResearchMatch adults were contacted and 402 completed the survey. Most respondents were over the age of 51 years (49% total) and held a master’s or bachelor’s degree (63% total). Over half of participants (54%) had their account accessed by someone without their permission. Almost half of participants (49%) reported the privacy of their personal information being violated. Analyses showed that, when adjusted for age range and education level, participants whose reputations were negatively affected as a result of information posted online were more likely to share electronic medical record data (OR = 2.074, 95% CI: 0.986–4.364) and genetic data (OR = 2.302, 95% CI: 0.894–5.93) versus those without this experience. Among participants who had an unpleasant experience as a result of giving out information online, those with some college/associates/trade school compared to those with a doctoral or other terminal degree were significantly more willing to share genetic data (OR = 1.064, 95% CI: 0.396–2.857). Across all privacy-related experiences, participants aged 18 to 30 were significantly more likely than those over 60 years to share music streaming data, ridesharing history data, and voting history data. Additionally, across all privacy-related experiences, those with a high school education were significantly more likely than those with a doctorate or other terminal degree to share credit card statement data. Conclusions: This study offers the first insights into how privacy-related experiences, adjusted for age range and education level, may shape ResearchMatch participants’ willingness to share several sources of real-world data sources with precision medicine researchers. Future work should further explore these insights.