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

Rachele M Hendricks-Sturrup; Christine Y Lu

doi:10.1017/cts.2023.4

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

J Clin Transl Sci. 2023 Feb 1;7(1):e64. doi: 10.1017/cts.2023.4. eCollection 2023.

Authors

Rachele M Hendricks-Sturrup^{1

2

3}, Christine Y Lu¹

Affiliations

¹ Department of Population Medicine, Harvard Pilgrim Health Care Institute and Harvard Medical School, Boston, MA, USA.
² Duke-Robert J. Margolis, MD, Center for Health Policy, Washington, DC, USA.
³ Department of Interdisciplinary Health Studies, Ohio University, Athens, OH, USA.

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 3^rd 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.

Keywords: Privacy; ResearchMatch; engagement; real-world data; real-world evidence.