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 str

SUBMITTER: Hendricks-Sturrup RM 

PROVIDER: S-EPMC10052457 | biostudies-literature | 2023

REPOSITORIES: biostudies-literature