the ICTR Biomedical Informatics Program Diana Gumas, MS

Transcription

1 the ICTR Biomedical Informatics Program Diana Gumas, MS

2 Widespread Bioinformatics Challenges Tsunami of Genomic and Clinical Data Islands of Information & Expertise Lack of Standards IT Systems Do Not Interoperate Well Kenneth H. Buetow, PhD, Director, NCI CBIIT

3 JHM Bioinformatics Today Investment in Enterprise Clinical Research IT Clinical Research Management System (CRMS) EPR2020/Amalga Clinical Data Analysis & Retrieval Service Tissue Banking Multiple Disconnected Pockets of Excellence Oncology research systems Database services REDCap Research Electronic Data Capture High Performance Computing Minimal Data Sharing with other CTSAs

4 Describe in 12 pages or less Support operations, administration, & research activities Communication with external orgs relevant to the CTSA Standards to maximize communications between internal and external systems Assessment of informatics performance across CTSA programs and with external partners Inter- and intra-organizational sharing of data, technology and best practices Data confidentiality and human subjects protections

5 Ideas

6 Support operations, administration, & research activities Clinical Research Management System (CRMS) multi-center support sponsor billing, tools to adjudicate patient bills import relevant clinical data for research purposes Enterprise Tissue Banking (software, freezers, services) Enhanced ability to mine clinical data for research I2b2 Natural Language Processing of Clinical Documents Build out data analysis services to assist researchers GCRC Software Genomic data Recruitment tool Secure databases for researchers If Epic selected build out clinical research functionality Any improvements needed of research admin tools?

7 Standards to maximize communications (internal & external) Better leverage existing data standards, e.g. LOINC Ontology services (Harold Lehmann) Integrated clinical system with shared standards to communicate patient data across JH orgs Patient portal to communicate with research participants Maryland Regional Health Network (RHIO)

8 Sharing of data, technology, best practices Internal Monthly workshops focused on informatics sharing w/researchers Integrate existing Hopkins pockets of bioinformatics excellence ICTR better facilitate access to bioinformatics resources Improve CRMS multi-center studies functionality to share data with research partners External Join existing CSTA data sharing opportunities: e.g. i2b2 Shine Cardiovascular imaging data sharing via Grid Develop sharing partnership with peer institution consortium catissue Grid share specimens with others Bench to Bedside (cab2b) Hire full-time informatics faculty member to focus on sharing with other CTSA organizations

9 Data confidentiality and human subjects protection Improve management of participant consents eirb? Role-based access De-identification of clinical data

10 Assessment of informatics performance NIH attaches importance to assessments of informatics performance and goal setting across the entire CTSA community. Therefore all Biomedical informatics Directors will participate in the national CTSA Informatics Key Function Committee that is the forum for discussion and agreement on standards, best practices, and/or solutions.???????? Establish JHM metrics for assessing our informatics performance. These metrics should be in line with CTSA goals

11 Communication with external orgs relevant to the CTSA allow for communication among CTSA consortium members and the research partners of clinical and translational investigators (e.g., government, clinical research networks, pharmaceutical companies, commercial vendors, laboratories, and equipment manufacturers).???????? CRMS multi-site feature improvements communicate with our clinical research network Take leadership role communicating with Epic regarding clinical research needs (vendors)

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