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

ABSTRACT:

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 s

SUBMITTER: Hendricks-Sturrup RM 

PROVIDER: S-EPMC9696408 | biostudies-literature | 2022 Nov

REPOSITORIES: biostudies-literature