Informatics Domain Task Force (idtf) CTSA PI Meeting 02/04/2015

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1 Informatics Domain Task Force (idtf) CTSA PI Meeting 02/04/2015

2 Informatics Domain Task Force (idtf) Lead Team Paul Harris, Vanderbilt University Medical Center, (co-chair) Steven Reis, University of Pittsburgh (SC appointee, co-chair) Philip Payne, The Ohio State University Justin Starren, Northwestern University Peter Tarczy-Hornoch, University of Washington Olga Brahznik (NCATS/DCI representative) Group Goals: Support the CTSA program in meeting program objectives Develop plans for projects that fill identified gaps in advancing translational science through innovation

3 Institute of Medicine Report:

4 Engage in Substantive Collaborations to Spur Innovation Engage and work as a Network to Solve Compelling Biomedical Problems

5 Informatics Domain Task Force (idtf) CTSA informatics community has a proven track record as a collaborative & productive group.

6 Informatics Domain Task Force (idtf) IMMEDIATE #1 Organize the idtf group #2 Formulate a set of Success Stories #3 Formulate a set of Big Ideas (gap analysis) #4 PI meeting #5 Cross-Collaboration Projects, Working Groups

7 Submission Criteria: Map to >= 1 of 10 NCATS CTSA thematic areas Resonate with IOM report and NCATS goals Rapid Collection 39 Stories Filtered by idtf Lead Team Advance C&T research across many sites Informatics Centric Collaborations

8 Informatics Community : Collective Achievements Four Exemplar Success Stories

9 an open source, semantic-web tool for finding people and the research they do. From: Site (Cornell)-developed, informatics-centric tool To: Non-profit collaborative, Duraspace, hosted international development community From 1 Site to more than 100 entities in > 30 countries CTSA RN Profiles Early NIH funding VIVO extended + added platform/standards credibility Consortium-supported recommendation for VIVO data standard accelerated CTSA site adoption, laid groundwork for data sharing 37/62 CTSA sites producing VIVO compatible data through VIVO or Incremental Progress Actuates Large Leaps: VIVO software and ontology publicly available - supporting development efforts Tools developed for VIVO Data from Success Story suggestions: Research Portal: Currently more than 300 researchers use this to share data on common projects with internal and external

10 an open source, semantic-web tool for finding people and the research they do. From: Site (Cornell)-developed, informatics-centric tool To: Non-profit collaborative, Duraspace, hosted international development community From 1 Site to more than 100 entities in > 30 countries CTSA RN Profiles Early NIH funding VIVO extended + added platform/standards credibility Consortium-supported recommendation for VIVO data standard accelerated CTSA site adoption, laid groundwork for data sharing 37/62 CTSA sites producing VIVO compatible data through VIVO or Incremental Progress Actuates Large Leaps: VIVO software and ontology publicly available - supporting development efforts Tools developed for VIVO Data from Success Story suggestions: Research Portal: Currently more than 300 researchers use this to share data on common projects with internal and external

11 an open source, semantic-web tool for finding people and the research they do. From: Site (Cornell)-developed, informatics-centric tool To: Non-profit collaborative, Duraspace, hosted international development community From 1 Site to more than 100 entities in > 30 countries CTSA RN Profiles Early NIH funding VIVO extended + added platform/standards credibility Consortium-supported recommendation for VIVO data standard accelerated CTSA site adoption, laid groundwork for data sharing 37/62 CTSA sites producing VIVO compatible data through VIVO or From Rapid Collection 39 Stories Incremental Progress Actuates Large Leaps: VIVO software and ontology publicly available - supporting development efforts Tools developed for VIVO Data from Success Story suggestions: Research Portal: Currently more than 300 researchers use this to share data on common projects with internal and external

12 an open source, semantic-web tool for finding people and the research they do. From: Site (Cornell)-developed, informatics-centric tool To: Non-profit collaborative, Duraspace, hosted international development community From 1 Site to more than 100 entities in > 30 countries CTSA RN Profiles Early NIH funding VIVO extended + added platform/standards credibility Data Standards + Consortium-supported recommendation for VIVO data standard accelerated CTSA site Innovators adoption, laid groundwork for data sharing 37/62 CTSA sites producing VIVO compatible data through VIVO or = IMPACT Incremental Progress Actuates Large Leaps: VIVO software and ontology publicly available - supporting development efforts Tools developed for VIVO Data from Success Story suggestions: Research Portal: Currently more than 300 researchers use this to share data on common projects with internal and external

13 Incremental Progress Accentuates Large Leaps:: i2b2 data export directly into REDCap REDCap Electronic Data Importer - uses REDCap API to auto-populate case report forms for trials with clinical data Cryptographic hash function widget enabling linking of datasets using PHI without releasing PHI. REDCap Sync: custom architecture to allow "off-line" use of REDCap An open access data management platform freely distributed + supported for academic, government and non-profit institutions From: Site (Vanderbilt)-developed, informatics tool To: International community of academic, non-profit and government partners From 1 Site to > 1,300 partners in 88 countries Early NIH funding Accelerated development timeline + added platform credibility CTSA researchers needed data management solutions to support diverse science CTSA informatics community created support and training models REDCap evolves based on informatics community and researcher feedback

14 Incremental Progress Accentuates Large Leaps:: i2b2 data export directly into REDCap REDCap Electronic Data Importer - uses REDCap API to auto-populate case report forms for trials with clinical data Cryptographic hash function widget enabling linking of datasets using PHI without releasing PHI. REDCap Sync: custom architecture to allow "off-line" use of REDCap An open access data management platform freely distributed + supported for academic, government and non-profit institutions From: Site (Vanderbilt)-developed, informatics tool To: International community of academic, non-profit and government partners From 1 Site to > 1,300 partners in 88 countries Early NIH funding Accelerated development timeline + added platform credibility CTSA researchers needed data management solutions to support diverse science CTSA informatics community created support and training models REDCap evolves based on informatics community and researcher feedback

15 An open access data management platform freely distributed + supported for academic, government and non-profit institutions From: Site (Vanderbilt)-developed, informatics tool To: International community of academic, non-profit and government partners From 1 Site to > 1,300 partners in 88 countries Early NIH funding Accelerated development timeline + added platform credibility CTSA researchers needed data management solutions to support diverse science CTSA informatics community created support and training models REDCap evolves based on informatics community and researcher feedback Incremental Progress Accentuates Large Leaps:: i2b2 data export directly into REDCap REDCap Electronic Data Importer - uses REDCap API to From Rapid Collection 39 Stories auto-populate case report forms for trials with clinical data Cryptographic hash function widget enabling linking of datasets using PHI without releasing PHI. REDCap Sync: custom architecture to allow "off-line" use of REDCap

16 An open access data management platform freely distributed + supported for academic, government and non-profit institutions From: Site (Vanderbilt)-developed, informatics tool To: International community of academic, non-profit and government partners From 1 Site to > 1,300 partners in 88 countries Early NIH funding Accelerated development timeline + added platform credibility CTSA researchers needed Solid data management Tools + solutions to support diverse science CTSA informatics community Innovators created support and training models REDCap evolves based on informatics community and researcher feedback = IMPACT Incremental Progress Accentuates Large Leaps:: i2b2 data export directly into REDCap REDCap Electronic Data Importer - uses REDCap API to auto-populate case report forms for trials with clinical data Cryptographic hash function widget enabling linking of datasets using PHI without releasing PHI. REDCap Sync: custom architecture to allow "off-line" use of REDCap

17 An open-minded CTSA/VA initiative designed to facilitate research in the VA programs (CTSA tools + VA researcher support) Developed a new model for efficient research with VA partners Shared CTSA-developed, VA sponsored data management tools Available to VA researchers with IRB Approved research protocols and all VA Quality Enhancement Research Initiative (QUERI) Investigators Jan, 2015: 540 users; 209 projects Grew from the CTSA TSIG beginning in 2013 CTSA & VA Collaborators: CTSA: University of Illinois at Chicago, Colorado, Vanderbilt, Cincinnati VA Information Resource Center (VIReC) VA Informatics and Computing Infrastructure (VINCI) REDCAP National Consortium Incremental Progress Accentuates Large Leaps: Demonstrated Usefulness: expanded C&T research enterprise to include the VA Dissemination: enhanced the availability of commonly used informatics tools supporting C&T research

18 An open-minded CTSA/VA initiative designed to facilitate research in the VA programs (CTSA tools + VA researcher support) Developed a new model for efficient research with VA partners Shared CTSA-developed, VA sponsored data management tools Available to VA researchers with IRB Approved research protocols and all VA Quality Enhancement Research Initiative (QUERI) Investigators Jan, 2015: 540 users; 209 projects Grew from the CTSA TSIG beginning in 2013 CTSA & VA Collaborators: CTSA: University of Illinois at Chicago, Colorado, Vanderbilt, Cincinnati VA Information Resource Center (VIReC) VA Informatics and Computing Infrastructure (VINCI) REDCAP National Consortium Incremental Progress Accentuates Large Leaps: Demonstrated Usefulness: expanded C&T research enterprise to include the VA Dissemination: enhanced the availability of commonly used informatics tools supporting C&T research

19 An open-minded CTSA/VA initiative designed to facilitate research in the VA programs (CTSA tools + VA researcher support) From Rapid Collection 39 Stories Developed a new model for efficient research with VA partners Shared CTSA-developed, VA sponsored data management tools Available to VA researchers with IRB Approved research protocols and all VA Quality Enhancement Research Initiative (QUERI) Investigators Jan, 2015: 540 users; 209 projects Grew from the CTSA TSIG beginning in 2013 CTSA & VA Collaborators: CTSA: University of Illinois at Chicago, Colorado, Vanderbilt, Cincinnati VA Information Resource Center (VIReC) VA Informatics and Computing Infrastructure (VINCI) REDCAP National Consortium Incremental Progress Accentuates Large Leaps: Demonstrated Usefulness: expanded C&T research enterprise to include the VA Dissemination: enhanced the availability of commonly used informatics tools supporting C&T research

20 An open-minded CTSA/VA initiative designed to facilitate research in the VA programs (CTSA tools + VA researcher support) Developed a new model for efficient research with VA partners Shared CTSA-developed, VA sponsored data management tools Available to VA researchers with IRB Approved research protocols and all VA Quality Enhancement Research Initiative (QUERI) Investigators Jan, 2015: 540 users; 209 projects Network Leaders + Driving Problem Grew from the CTSA TSIG beginning in 2013 CTSA & VA Collaborators: = IMPACT CTSA: University of Illinois at Chicago, Colorado, Vanderbilt, Cincinnati VA Information Resource Center (VIReC) VA Informatics and Computing Infrastructure (VINCI) REDCAP National Consortium Incremental Progress Accentuates Large Leaps: Demonstrated Usefulness: expanded C&T research enterprise to include the VA Dissemination: enhanced the availability of commonly used informatics tools supporting C&T research

21 A LOCAL SITE Success that could become a Future Network Success Story Ideal complement to i2b2 for research $1 million / year improved reimbursement Used for over 700 research studies Referenced in 74 publications Site-developed tool (University of Michigan) A version is used at Michigan VA Could other sites use this tool? Can Network and idtf facilitate sharing Incremental Progress Accentuates Large Leaps: Incremental improvement to i2b2 functionality, yet Increases Network capacity for cross-institutional EHR phenotyping for cohort identification

22 A Site Success that could become a Future Network Success Story Ideal complement to i2b2 for research $1 million / year improved reimbursement Used for over 700 research studies Referenced in 74 publications Site-developed tool (University of Michigan) A version is used at Michigan VA Could other sites use this tool? Can Network and idtf facilitate sharing Methods Development + Driving Problem + Network Uptake Incremental Progress Accentuates Large Leaps: Incremental improvement to i2b2 functionality, yet Increases Network capacity for cross-institutional EHR phenotyping for cohort identification

23 Rapid Collection > 50 Ideas Submission Criteria: Map to >= 1 of 10 NCATS CTSA thematic areas idtf Lead Team Resonate with IOM report and NCATS goals Advance C&T research across many sites Informatics Centric Collaborations Crowd Sourced Gap Analysis

24 Big Ideas Organized in Project-Themed Clusters Clinical Trials 1. Last Mile of Recruitment Final Mile (physician to patient) recruitment solutions Patient Portals and Telehealth to Enhance Recruitment Consortium-wide clinical trials alerts in the EHR to facilitate recruitment Improve Diversity, Recruitment, and Implementation through EHR data re-use Workforce Development 2. Informaticscentric Researcher Training Network-wide training series (e.g. coordinated MOOCs) Develop biomedical & health informatics competencies, a la REDCap Certificate pgm. Expand informatics competencies to a wider group Data-driven training program for new C&T clinician scientists Multivariate statistics and scripting language competency development Bioinformatics Workshop Series Address clinical data quality as it relates to research and educate around this Efficiency / Quality 3. Software Interoperability & Extended Functionality Informatics system interoperability for CTSA's best-of-breeds. REDCap API for R or other stats analysis pkg Clinical Trial in a Box" solution on the REDCap platform Mobile device solutions for study data collection Ontologize REDCap Engage with the HL7 - FHIR and the Argonaut project Mobile apps for Clinical Decision Support SMART Apps for point of care EHR APIs for integration of patient-derived non-clinical data (from sensor devices,

25 Big Ideas Organized in Project-Themed Clusters Clinical Trials + 4. EHR Phenotyping and Clinical Data Reuse Shared NLP and Phenotyping Resources Computational phenotype library for cohort identification Network-wide adoption of Clinical Data Free text search (EMERSE) Cross-site methods for extracting discrete data from text documents Unstructured notes deidentification tools and natural language processing Adopt a common shared data model for phenotyping Big Data + 5. Central or Federated Data Repositories CTSA consortium-wide data sharing repository Common Platform and/or Cross-Site assistance with Creation of Data Repositories Data Commons to democratize the use of biomedical research data Secure Research Workspace to improve data security Shared de-identification tools and policies to enhance data sharing Genomic Data Stewardship - Policy development and Implementation of Best Practices Open data from CTSA clinical trials. Adopt a common shared data model for phenotyping Computational phenotype library for cohort identification Semantic data framework for interoperability Comprehensive semantic data dictionary Learning Health Care System Development Address clinical data quality as it relates to research and educate around this Create an EDW

26 Leaps Forward Consortium-Wide Clinical Trials Learning Health Care System E-Research Moving Beyond Traditional RCTs Gaps

27 #1 Organize the idtf group #2 Formulate a set of Success Stories #3 Formulate a set of Big Ideas (gap analysis) #4 PI meeting #5 Cross-Collaboration Projects, Working Groups Ready for CTSA 2.0 Informatics Domain Task Force (idtf) Next

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