A two-site survey of medical center personnel’s willingness to share clinical data for research: implications for reproducible health NLP research

BACKGROUND: 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). METHODS: We aimed to assess the degree to which individuals would be willing 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). Such a sample could be expected to respond like a typical potential participant from the general public who is given complete and fully informed consent about the pros and cons of participating in a research study. RESULTS: Two thousand one hundred forty respondents completed the surveys. 56% of respondents were “somewhat/definitely willing” to share clinical data with identifiers, while 89% of respondents were “somewhat (17%)/definitely willing (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. CONCLUSIONS: We conclude that a substantial fraction of potential patient participants, once educated about risks and benefits, would be willing to donate de-identified clinical data to a shared research repository. A slight majority even would be willing to share absent de-identification, suggesting that perceptions about data misuse are not a major concern. Such a repository of clinical notes should be invaluable for clinical NLP research and advancement.