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

Autor: Casey Rommel, Chunhua Weng, John F. Hurdle, Carol Friedman
Rok vydání: 2019
Předmět:
Male
Biomedical Research
020205 medical informatics
02 engineering and technology
computer.software_genre
01 natural sciences
Health informatics
Health data
0302 clinical medicine
Informed consent
Surveys and Questionnaires
0202 electrical engineering
electronic engineering
information engineering
Center (algebra and category theory)
030212 general & internal medicine
media_common
Academic Medical Centers
Informed Consent
Health Policy
Middle Aged
Computer Science Applications
Substance abuse
lcsh:R858-859.7
Female
Psychology
Confidentiality
Natural language processing
Adult
Adolescent
Health Personnel
media_common.quotation_subject
New York
Health Informatics
Sample (statistics)
lcsh:Computer applications to medicine. Medical informatics
Young Adult
03 medical and health sciences
Perception
medicine
Humans
0101 mathematics
Natural Language Processing
Information Dissemination
business.industry
Research
010102 general mathematics
medicine.disease
Mental health
Data sharing
Wireless site survey
Domestic violence
Artificial intelligence
Patient Participation
business
computer
Zdroj: ICHI Workshops
BMC Medical Informatics and Decision Making
BMC Medical Informatics and Decision Making, Vol 19, Iss S3, Pp 5-12 (2019)
ISSN: 1472-6947
Popis: 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.
Databáze: OpenAIRE
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