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Stud Health Technol Inform. 2019 Aug 21;264:1393-1397. doi: 10.3233/SHTI190456.

Crowdsourcing Public Opinion for Sharing Medical Records for the Advancement of Science.

Author information

1
Department of Biomedical Informatics, Columbia University, New York City, NY, USA.
2
Department of Biomedical Informatics, University of Utah, Salt Lake City, UT, USA.

Abstract

This study used Amazon Mechanical Turk to crowdsource public opinions about sharing medical records for clinical research. The 1,508 valid respondents comprised 58.7% males, 54% without college degrees, 41.5% students or unemployed, and 84.3% under 40 years old. More than 74% were somewhat willing to share de-identified records. Education level, employment status, and gender were identified as significant predictors of willingness to share one's own or one's family's medical records (partially identifiable, completely identifiable, or de-identified). Thematic analysis applied to respondent comments uncovered barriers to sharing, including the inability to track uses and users of their information, potential harm (such as identity theft or healthcare denial), lack of trust, and worries about information misuse. Our study suggests that implementing reliable medical record de-identification and emphasizing trust development are essential to addressing such concerns. Amazon Mechanical Turk proved cost-effective for collecting public opinions with short surveys.

KEYWORDS:

Crowdsourcing; data collection; privacy

PMID:
31438155
DOI:
10.3233/SHTI190456
[Indexed for MEDLINE]

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