Kevin Read, MLIS, MAS NYU Langone Health

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Presentation transcript:

Kevin Read, MLIS, MAS NYU Langone Health Twitter: @readkev A cross-institutional data discovery collaboration: Highlighting invisible research data Supplementing EHR data for research S24 Kevin Read, MLIS, MAS NYU Langone Health Twitter: @readkev

Disclosure I have no relevant relationships with commercial interests to disclose. AMIA 2017 | amia.org

Learning Objectives After participating in this session you should be better able to: Describe an initiative designed to make research data more discoverable Identify the benefits of a multisite data discovery initiative: Highlighting institutional research data Identifying high-value datasets that require additional resources Informing national data discovery efforts AMIA 2017 | amia.org

The Data Discovery Problem 88% of datasets from NIH-funded publications were ‘invisible’ (>200,000 datasets) AMIA 2017 | amia.org

The Data Discovery Solution (partly) datamed.org AMIA 2017 | amia.org

The Persistent Discovery Problem ? >200,000 unidentified datasets/yr datamed.org AMIA 2017 | amia.org

NYU Data Catalog: A Solution datacatalog.med.nyu.edu AMIA 2017 | amia.org

NYU Data Catalog: A Solution datacatalog.med.nyu.edu DOES NOT STORE DATA AMIA 2017 | amia.org

NYU Data Catalog: Dataset Types External Datasets NYU Datasets AMIA 2017 | amia.org

NYU Data Catalog: External Datasets AMIA 2017 | amia.org

NYU Data Catalog: Internal Datasets NYU Datasets AMIA 2017 | amia.org

NYU Data Catalog: Types of Data Population health data Quality improvement data Submissions to clinical registries EHR data pulls for research Epidemiology data Clinical trials data Geospatial data AMIA 2017 | amia.org

NYU Data Catalog: Types of Data Population health data Quality improvement data Submissions to clinical registries EHR data pulls for research Epidemiology data Clinical trials data Geospatial data AMIA 2017 | amia.org

Non-NYU Patient Encounter External Data Transfers EHR: EPIC Analysis Datasets NYU Patient Encounter Clinical Data Request Publications Clinical Data Governance Abstracted Data Reports Analysis Datasets EDC Publications Reports External Site Non-NYU Patient Encounter External Data Transfers External Site AMIA 2017 | amia.org

NYU Data Catalog: EHR Datasets AMIA 2017 | amia.org

NYU Data Catalog: EHR Datasets AMIA 2017 | amia.org

NYU Data Catalog: Flexible Discovery Administrative Research Software Quality Improvement AMIA 2017 | amia.org

NYU Data Catalog: Open Source https://osf.io/vg7rn/ https://github.com/nyuhsl/data-catalog AMIA 2017 | amia.org

NYU Data Catalog: Interoperability AMIA 2017 | amia.org

NYU Data Catalog: DATS Interoperability DATS Metadata Specifications NYU Data Catalog Metadata AMIA 2017 | amia.org

NYU Data Catalog: Discovery Solution? AMIA 2017 | amia.org

NYU Data Catalog: Discovery Solution? AMIA 2017 | amia.org

NYU Data Catalog: Collaboration Open Source Interoperability AMIA 2017 | amia.org

Data Catalog Collaboration Multisite Collaboration: Data Catalog Collaboration

Data Catalog Collaboration Multisite Collaboration: Efforts Research, EHR, QI data Data Catalog Collaboration

Data Catalog Collaboration Multisite Collaboration: Efforts Genomics data Data Catalog Collaboration

Data Catalog Collaboration Multisite Collaboration: Efforts Data Catalog Collaboration Research data

Data Catalog Collaboration Multisite Collaboration: Efforts Data Catalog Collaboration Research data

Data Catalog Collaboration Multisite Collaboration: Efforts Data Catalog Collaboration CTSI - GetData@Duke Clinical Research Institute

Data Catalog Collaboration Multisite Collaboration: Efforts Data Catalog Collaboration Research data

Data Catalog Collaboration Multisite Collaboration: Outcomes Data Catalog Collaboration Previously undiscoverable: Research data EHR data Genomics Data QI data

NYU Data Catalog Growth >12k users >55k page views >400 researchers AMIA 2017 | amia.org

Data Catalog Model: Benefits Provides low-barrier entree into data sharing Offers researchers with a level of control over their data Flexibility of the types of research data objects described Ideal for identifying high-value datasets Valuable for gauging data sharing challenges AMIA 2017 | amia.org

Future Directions Develop a Data Catalog Coordinating Center Recruit additional institutions looking to improve data discovery Develop QI/Research Arm: Data discovery use cases Data types High value datasets Data sharing workflows Partner with national data discovery initiatives AMIA 2017 | amia.org

References NYU Data Catalog: https://datacatalog.med.nyu.edu/ Read K, Contaxis N, L I, Larson C, LaPolla FWZ, Surkis A. NYU Data Catalog. 2017. https://osf.io/vg7rn/ Lamb I, Larson C. Shining a light on scientific data: Building a data catalog to foster data sharing and reuse. Code4Lib. 2016;32. Available from: http://journal.code4lib.org/articles/11421 AMIA 2017 | amia.org

Email me at: kevin.read@med.nyu.edu Thank you! Email me at: kevin.read@med.nyu.edu