NINR Big Data in Symptoms Research Boot Camp



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Monday July 20, 2015 INTRODUCTION & FOUNDATION TO THE ERA OF BIG DATA 8:00 8:50am Meet & Greet All participants 8:50 9:00am Program Opener/ Introductions & Program Host Mary B. Engler, PhD., RN, MS NINR Training Director, DIR 9:00 9:45am Welcome & Program Overview Patricia Grady, PhD., RN, FAAN Director, National Institute of Nursing Research 9:45 10:45am Opening Keynote: Human Genomics, Precision Medicine Initiative, and Advancing Human Health Eric Green, MD, PhD. Director, National Human Genome Research Institute 10:45 11:00am BREAK BREAK 11:00am 12:00 Big Data Analytics for Healthcare Bonnie Westra, PhD., RN, FAAN, FACMI 12:00 1:15 Big Data in Nursing Research Patricia Brennan, PhD., RN, FAAN University of Wisconsin-Madison 1:15 2:15pm LUNCH LUNCH 2:15 3:30pm Nursing & Health Informatics: Empowering Research Connie Delaney, PhD., RN, FAAN, FACMI 3:30 3:45pm BREAK BREAK 3:45 5:00 pm Big Data, Symptom Science, and Health Disparities: The Promise and the Peril Suzanne Bakken, DNSc, RN, FAAN Columbia University 5:00 5:15pm Questions / Closing Remarks

Tuesday July 21, 2015 CLINICAL PRACTICE: BIG DATA IN SYMPTOM RESEARCH 8:30 9:45am Research Use of Clinical Data Clement McDonald, MD NIH National Library of Medicine 9:45 11:00am Becoming a Data Scientist Patricia Mabry, PhD. Office of Disease Prevention Office of the Director, NIH 11:00 11:15am BREAK BREAK 11:15 12:30 Healthcare Analytics and Patient Outcomes Bonnie Westra, PhD., RN, FAAN, FACMI 12:30 1:30 LUNCH LUNCH 1:30 2:45pm Harnessing Big Data in Practice: Emerging Roles in Informatics Patricia Abbott, PhD., RN, FAAN, FACMI University of Michigan 2:45 3:00pm BREAK BREAK 3:00 4:00pm Integrating Symptom Science with Big Data Dianne Reeves, RN, MSN NIH National Cancer Institute 4:00 5:30pm Group Network Reception (Sponsored by FAES) All Presenters and Participants

Wednesday July 22, 2015 ETHICAL, LEGAL AND REGULATORY ASPECTS IN DATA USE 8:30 9:45am Ethics: The Challenge of Ethical, Legal & Social Implications in Nursing Research Kathi Huddleston, PhD., RN, CCRC Inova Translational Medicine Institute 9:45 11:00am Health Databases & Electronic Data Methods Erin Holve, PhD., M.P.H., M.P.P. Academy Health 11:00 11:15am BREAK BREAK 11:15 12:30 Health Information Technology: Privacy & Security Protections for Electronic Personal Health Information Alice Leiter, JD Hogan Lovells 12:30 1:45 LUNCH LUNCH 1:45 3:00pm How Can Computerized Systems Be Used in FDA Regulated Clinical Investigations? Jonathan S. Helfgott, MS FDA, OSI, OC, CDER, DHHS 3:00 3:15pm BREAK BREAK 3:15 4:30pm Using Healthcare Analytics Software to Integrate Data Jean Stanford, MS Del Ray Analytics Vincent Stanford, MS Data Scientist, National Institute of Standards & Technology 4:30 5:00pm Closing Remarks / Questions

Thursday July 23, 2015 DATA MINING AS A TOOL FOR RESEARCH & KNOWLEDGE DEVELOPMENT 8:30 9:30 am Incidental Findings Related to Whole Genome Sequencing Ann Cashion, PhD., RN, FAAN Scientific Director National Institute of Nursing Research 9:30 10:30a m Introducing Three NCBI Resources to Navigate Testing for Disease Linked Variants: MedGen, GTR, and ClinVar Wendy Rubinstein, MD, PhD, NIH, National Library of Medicine 10:30 10:45 BREAK BREAK 10:45 11:45 Human Genomes and Big Data Challenges 11:45 12:45 The Utility of Clinical Genomic Databases in Big Data Gerry Higgins, MD, PhD. AssureRx Health, Inc. Medha Bhagwat, PhD NIH Library 12:45-1:30pm LUNCH LUNCH 1:30 3:00 pm Genomic Dataset Application Exercise (Group A) Tour of the NIH Clinical Center (Group B) 3:15 4:45pm Genomic Dataset Application Exercise (Group B) Tour of the NIH Clinical Center (Group A) Medha Bhagwat, PhD. NIH Tour Guides Medha Bhagwat, PhD. NIH Tour Guides

Friday July 24, 2015 BRINGING IT ALL TOGETHER 8:30 9:45am Outcomes of Big Data Sandra Mitchell, PhD. Research Scientist Outcomes Research Branch; Healthcare Delivery Research Program; Division of Cancer Control and Population Sciences; National Cancer Institute 9:45 10:15am BREAK 10:15 11:30 am Boot Camp Summary Augie Diana, PhD. NINR Extramural Division; Team lead, Small Business, Technology & Informatics 11:30 1:00pm LUNCH LUNCH 1:00 4:30pm Presentations and Panel Q&A: Funding Opportunities for Training, Career Development, and Big Data Research National Institute of Nursing Research (NINR) Martha Matocha, PhD. NINR Program Director David Banks, PhD. Health Scientist Administrator National Library of Medicine (NLM) Valerie Florance, PhD. Director of Extramural Programs National Cancer Institute (NCI) J. Jerry Li, M.D., PhD. Program Director Division of Cancer Biology