Clinical Research Data Systems and Networks Supported by the BU-CTSI William G. Adams, MD Professor of Pediatrics Director, BU-CTSI Clinical Research Informatics Boston University School of Medicine/Boston Medical Center badams@bu.edu
Our “EcoSystem” • BMC is largest safety net provider in New England • Nearly all CHCs are FQHCs • EHR-based care • BMC since 1999 • CHCs since 2003
A Vision • Data is open - privacy is protected • Researchers focus on questions more than queries • Data and tools are standardized so the same question can be asked at multiple sites
BMC Clinical Data Warehouse • Source data for BMC clinical systems • Dedicated research data analyst(s) • Includes CHC data and BMC data • Claims being added
BU-CTSI Clinical Data Resources and Networks
i2b2 • “Informatics for Integrating Biology with the Bedside” • Open-source software based on the MGH Research Patient Data Repository (RPDR) • Collection of modules or “cells” constitute the i2b2 “hive” • De-identified clinical data repository • Data linked to standardized vocabularies • Web-based query and analytic tools
EHR Data Data: BU-i2b2 •Demographic •Insurances Resources •Services •Medications and •Problems •Labs Processes Staging Area •Clinical Observations Functions: •MPI linkage Sites: •Data cleaning • Boston Medical Center •Standardization • Dorchester House MSC (LOINC, CPT, RxNorm, • Codman Square HC ICD9,SNOMED CT) • Healthcare for the Homeless • Greater Roslindale MDC • Mattapan CHC • South End CHC • South Boston CHC • Uphams Corner CHC i2b2 Database • People (1.6+ mil) BMC-i2b2 • Facts (2+ billion) • BMC only • Concepts • Web accessible • Aggregate data Health Disparities Repository Tools • No additional IRB • BMC + CHCs • Query Cell • RDP access (with SAS, STATA) • HOME Cell • HOME Cell and data extracts • IRB approval required
Ontologies Facts Counts
I2b2 Data Model
i2b2 Compatible Data • Demographics • Problems/Diagnoses • Medications • Clinical Observations • Procedures • Laboratory Data • Genomic Data • Much more…
i2b2 Recent Additions
Sample ACT SHRINE Query
Sample Query: Diabetes and A1C Cohort
Sample Query: Narrowing Results Range
Sample Query: Counting Patients
Sample Query: Exploring the Cohort
Sample Query: Predicting Arrivals
Projects/activities I2b2 Networking BMC Projects • Cardiovascular Health Atlas • BMC Cancer Registry Integration • ePROS – psychotropic • BP Normalization and Care medication use in kids • VVV in BP, lipid, and Hgb1C • ePROS – on- off-label safety • Sickle Cell QI (children and adults) • ePROS – pediatric hypertension • Community-based smoking cessation • Long-term outcomes following • Pneumonia rates in PCV vaccine era bariatric surgery • HPV vaccination and morbidity • Insurance switching • Algorithms for Personalized Decision • ACT Network Making • PMI/All of Us • Vital Village – geographic health effects • Predicting suicide • Asthma, Housing, Environment Models • OHDSI • Social Determinants and Child BH
I2b2 vs OMOP Data Models i2b2 OMOP
Opportunities/Challenges • High-touch vs self-service • Building capacity • Data literacy • Secure workspace(s) • Analytic support • Data governance • Asking compelling questions
Time for a Health Data Science Affinity Research Collaborative (ARC) at BU/BMC? ARCs • At least 5 investigators and trainees and a director • Focus on a research theme, explored with the aid of different disciplines and technologies. • Selected ARCs funded for up to three years via DOM+CTSI+IBRO Key words: Inclusiveness; Innovation; Interdisciplinary Contact Bill Adams (Bill.Adams@bmc.org) or/and Katya Ravid (kravid@bu.edu) with ideas or for more information.
BU-CTSI Biomedical Informatics Core Key Personnel Investigator Expertise Roles Director, clinical and population health informatics lead, William Adams CRI, Epi, i2b2 manages and promotes i2b2 and OMOP networks Azer Bestavros CDS,ML-PA,EDS Computational and data science lead Co-director, bioinformatics lead, CRC bioinformatics liaison Marc Lenburg BI Rebecca Mishuris CRI, EHR, PH EHR innovation research, ITS-liaison, Epic SME Christopher Shanahan CRI,RD CRITC lead, app and registry SME, addiction informatics SME Machine learning, prediction, School of Engineering liaison Ioannis Paschalidis CDS,ML-PA Bindu Kalesan Epi, HSR Translational Epidemiology and computational resources Belinda Borelli MH, TBC Mobile Health lead technology-based behavior change SME Adam Gower BI Bioinformatics analytic support, OpenSesame and GeneHive Adam Labadorf BI BU-HUB lead, bioinformatics analytic support Population Health and ACO Analytics lead, data governance Michael Silverstein HSR, PH, ACO Public Health Informatics, promotes Optum and other data Martha Werler PHI, Epi, PH VA-based informatics lead Nan Do CRI, EHR, HSR Expertise Legend: ACO-Accountable Care Organization, BI-Bioinformatics, CDS-Computational and Data Sciences, CRI–Clinical Research Informatics, EHR-Electronic Health Record, Encryption and Data Security (EDS), HSR-Health Services Research, i2b2- Informatics for Integrating Biology and the Bedside, ML-PA-Machine Learning/Predictive Analytics, MH-Mobile Health, OMOP- Observational Medical Outcomes Project, PH-Population Health, RD-Registry Development, SME-subject matter expert, TBC- Technology-based Behavior Change
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