A Two-Site Survey of Medical Center Personnel's Willingness to Share Clinical Data for Research: Implications for Reproducible Health NLP Research

Abstract

A shareable repository of clinical notes is critical for advancing natural language processing (NLP) research, and therefore a goal of many NLP researchers is to create a shareable repository of clinical notes, that has breadth (from multiple institutions) as well as depth (as much individual data as possible). We aimed to assess the degree to which individuals would be to contribute their health data to such a repository. A compact e-survey probed willingness to share demographic and clinical data categories. Participants were faculty, staff, and students in two geographically diverse major medical centers (Utah and New York). 2,140 respondents completed useable surveys. 56% of respondents were somewhat/definitely willing to share clinical data with identifiers, while 89% of respondents were somewhat (17%) or definitely (72%) to share without identifiers. Results were consistent across gender, age, and education, but there were some differences by geographical region. Individuals were most reluctant (50-74%) sharing mental health, substance abuse, and domestic violence data.