A survey of United States adult privacy perspectives and willingness to share real-world data

Abstract Objective: Real-world data privacy is a complex yet underexplored topic. To date, few studies have reported adult perspectives around real-world data privacy and willingness to share real-world data with researchers. Methods: Relevant survey items were identified in the literature, adapted and pilot tested among a small convenience sample, and finalized for distribution. The survey was distributed electronically in April 2021 among adults (≥18 years of age) registered in ResearchMatch (www.researchmatch.org). Microsoft Excel was used to assess descriptive statistics across demographical items and four privacy-related items. Results: Of 402 completed responses received, half of respondents (∼50%) expressed willingness to share their prescription history data and music streaming data with researchers and unwillingness to share real-world data from several other sources. Most (53–93%) of participants expressed concern with five statements reflecting the sharing and use of their digital data online. Most participants (71–75%) agreed with four statements focused on individual measures taken to protect their personal privacy and disagreed (77–85%) with two statements centered on not being concerned about sharing or 3rd party access to their personal data online. Conclusions: Our observations indicate an important yet unmet need to further explore and address real-world data privacy concerns among US adults engaging as prospective research participants.