Big Data Research for Transforming Health Care. 10 th Anniversary Minnesota e-health Summit 2014 St Louis Park, MN

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1 Big Data Research for Transforming Health Care 10 th Anniversary Minnesota e-health Summit 2014 St Louis Park, MN

2 Objectives Explore a national action plan to coordinate efforts to standardized data for big data research Describe a national effort to include nursing and interprofessional data in clinical data warehouses. Identify next steps for creating reusable and comparable data across health systems for research to improve the health of populations Connie White Delaney, PhD, RN, FAAN, FACMI University of Minnesota School of Nursing Professor & Dean Academic Health Center Associate Director. CTSI-BMI Acting Director. of the Institute for Health Informatics (IHI)

3 In gratitude for synergistic initiatives

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5 ONC

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7 CTSA is a national Clinical and Translational Science Award (CTSA) consortium created to accelerate laboratory discoveries into treatments for patients. The CTSA program is led by the National Institutes of Health's National Center for Research Resources.

8 Clinical and Translational Science Awards (CTSAs) Program creates a definable academic home for clinical and translational research. CTSA institutions work to transform the local, regional, and national environment to increase the efficiency and speed of clinical and translational research across the country

9 Clinical and Translational Science Awards (CTSAs) Program creates a definable academic home for clinical and translational research. CTSA institutions work to transform the local, regional, and national environment to increase the efficiency and speed of clinical and translational research across the country

10 UMN CTSI Biomedical Health Informatics Tools CTMS ResearchMatch Redcap Analytical tools Natural Language Processing MN Supercomputer Institute (MSI) Tunnel In process: Genotype/phenotype mapping Data AHC IE Clinical Data Repository i2b2 cohort-discovery tool MN Death Index In process: Dental EHR Imaging; Center for Magnetic Resonance Research (CMRR); clinical images UMN Biospecimen Enterprise Storage initiative & data: Enterprise storage initiative, BioMedical Genomics Center Services Informatics Consulting Service AHC IS CTSI Portal Front Door Researchers & Users Community Greater Plains Collaborative (PCORI) Hennepin County Medical Center (NSF grant) CTSA Collaborations Education Generalist Specialist \Informaticians IHI MHI, MS and PhD SON DNP-NI, PhD-NI SPH MPH-Informatics UMII Biomedical Informatics & Computational Biology Graduate degrees

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12 Clinical Data Repository of +2 million patients Cohort discovery /recruitment i2b2 cohort discovery Requesting further information for a cohort identified via i2b2 Advanced cohort discovery, for criteria not available via i2b2 Observational studies Requesting a large dataset for direct analysis (e.g., retrospective cohort, crosssectional study) Data available to UMN researchers via the clinical data repository

13 Leveraging CTSI - PCORI USA Patient-Centered Outcomes Research Institute (PCORI) Research Priorities - PCORI has approved 279 awards totaling more than $464.4 million to fund patient-centered comparative clinical effectiveness research projects to date (12/2013). UMN in PCORI Greater Plains Collaborative - Network 10 Sites Kansas - University of Kansas Medical Center (PI); Missouri, Iowa, Wisconsin (3), Minnesota, Nebraska, Texas (2) ~$7M/1.5 years; Building Research Network

14 Leveraging CTSI - NCATS National Center for Advancing Translational Sciences (NCATS) U MN one of 13 CTSA sites nationally selected for Stage 1 Cohort Exploration Increase Accrual to the Nations Highest Priority Clinical Trials. i2b2 with frequent downloads SHRINE installation and operational capacity

15 Data-Enabled Science - getting closer to real - - data in motion - Volume Velocity Variety Veracity Value Analytics Visualization Genome Symptome Exposome Behavior and more is not about analyzing small data sets that can be easily dealt with by using conventional statistics or even manually.the goal is to make sense of big data. Cios, K., & Nguyen, D. Data mining methods and visualization. In S. J. Henly (Ed.), Routledge international handbook of advanced quantitative methods for nursing research. Oxford, UK: Routledge. (Forthcoming) SLIDE CREDIT: S Henly CWD 2014

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17 Leveraging CTSI Optum Labs/School of Nursing Partnership Optum Labs Data Warehouse (OLDW) * reflects the linkage of large claims data sources * provide detailed health care services information * privately-insured & electronic health record data Optum Labs Data Warehouse Population 100 Million Persons with Coverage 93 Million Persons with Medical Coverage 66 Million Persons with Medical and Pharmacy Coverage Medicare Part C Advantage Timeframe Million Medical Coverage 4.3 Medicare Part D Humedica (Electronic Health Record EHR) 30 Million persons with EHR data

18 Optum Labs Partners Optum Mayo Clinic AARP (formerly the American Association of Retired Persons) American Medical Group Association Boston University School of Public Health Lehigh Valley Health Network Pfizer Rensselaer Polytechnic Institute (RPI) Tufts Medical Center University of Minnesota School of Nursing Boston Scientific

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20 NINR Research Centers CDEs Inform Big Data for Symptom/Symptom Cluster Science Dr. Donna Jo ("DJ") McCloskey NINR Research Methodologies Boot Camp to Explore Big Data

21 NCDR coupled with large data Analyze existing big databases and troll for successful patterns of impacts related to interprofessional activity CMII VA Medicare/Medicaid databases national HCCI private sector databases

22 The Nexus 2013 Regents of the University of Minnesota, All Rights Reserved

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25 NCDR Surveys SURVEY RESPONDENTS QUESTIONS TIME TO COMPLETE DEMOGRAPHICS ALL 6 QUESTIONS CREATING A PERSONAL PROFILE NETWORK EDUCATION SURVEY NETWORK INPUTS SURVEY NETWORK USER SURVEY SITE SPECIFIC PROJECT SURVEY INFORMATION TECHNOLOGY READINESS SURVEY IPE READINESS LEAD OF THE INTER-PROFESSIONAL EDUCATION INITIATIVE (WITH INPUT FROM ASSOCIATED EDUCATIONAL UNITS) NEXUS INITIATIVE PI/LEAD WITH CONSULTATION FROM TEAM OF EDUCATIONAL, CLINICAL, FINANCE, AND ADMINISTRATIVE LEADERS ENGAGED IN IMPLEMENTING THE NEXUS INITIATIVE. ALL CLINICAL AND EDUCATIONAL PARTICIPANTS IN THE NEXUS INITIATIVE (E.G., CLINICIANS, FACULTY, STUDENTS) TO BE DETERMINED BY INCUBATOR SITE TEAM IN CONSULTATION WITH THE NATIONAL CENTER IT, QI, OR INFORMATICS LEADERSHIP CLINIC PROVIDERS ACROSS PROFESSIONS 23 QUESTIONS ABOUT THE INTERPROFESSIONAL EDUCATION PROGRAM 51 QUESTIONS RELATED TO GENERAL FINANCIAL DATA 67 QUESTIONS RELATED TO INTERPROFESSIONAL EDUCATION AND COLLABORATIVE TEAMWORK AT THE CLINICAL NEXUS SITE AGGREGATE QUESTIONS RELATED TO THE PROCESSES AND OUTPUTS OF YOUR INDIVIDUAL PROJECT(S) OVERVIEW OF TECHNOLOGY SYSTEMS INTO WHICH DATA IS GATHERED AT THE SITE AND FROM WHICH DATA WILL BE SHARED <5 MINUTES MINUTES (FOLLOWING 1 2 COLLECTIVE HOURS DATA GATHERING WITH EDUCATIONAL LEADERS) 30 MINUTES (FOLLOWING 1 2 COLLECTIVE HOURS DATA GATHERING FROM FINANCE, OPERATIONS, HR, FACILITIES, ETC.) MINUTES (FOLLOWING CONVENING OF ALL TEAM MEMBERS WHO WILL WORK ON THE PROJECT) DETERMINED BY THE SURVEY DESIGNED FOR THE INDIVIDUAL PROJECT(S) MINUTES (FOLLOWING 1 2 COLLECTIVE HOURS DATA GATHERING FROM CIO, INFORMATICIST, TECHNOLOGY LEADERS COMPLETED DURING A FACILITATED MEETING

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27 Werley, HH & Divine, E., & Zorn, C. (1988). Nursing Minimum Data Set Data Collection Manual. University of Wisconsin, Milwaukee, Nursing Minimum Data set (NMDS) National Standard SnomedCt, LOINC slide credit - BWestra

28 Nursing Management Minimum Data Set (NMMDS) National Standard LOINC slide credit - BWestra Huber D, Schumacher L, Delaney C. Nursing management minimum data set (NMMDS). J Nurse Adm. 1997;27(4):42-48.

29 ehealth The ICN ehealth Programme encompasses: International Classification for Nursing Practice (ICNP ) an international standard to facilitate the description and comparison of nursing practice locally, regionally, nationally and internationally; ICN Telenursing Network aims to involve and support nurses in the development and use of telehealth technologies; and Connecting Nurses initiative which provides an online forum for nurses worldwide to share ideas, advice and innovations.

30 International Classification for Nursing Practice ( ICNP ) Vision ICNP is an integral part of the global information infrastructure informing health care practice and policy to improve patient care worldwide. Strategic Goals Serve as a major force to articulate nursing s contribution to health and health care globally. Promote harmonization with other widely used classifications and the work of standardization groups in health and nursing. Contact: Amy Amherdt. ICN ehealth Programme, amherdt@uwm.edu

31 ICNP Research & Development Centres Australia Canberra Hospital, Research Centre for Nursing and Midwifery Practice Flinders University, Disaster Nursing Centre Austria, Germany, & Switzerland German Speaking ICNP User Group with National Nurses Associations Brazil Federal University of Paraiba, Post-Graduate Program in Nursing Canada Registered Nurses Association of Ontario Chile University of Concepción, Department of Nursing Iran Iranian Nursing Organization Korea Seoul National University, College of Nursing Poland Medical University of Lódz, Nursing and Midwifery Portugal Porto Nursing School USA University of Minnesota, School of Nursing

32 Big Data Research for Transforming Health Care 10 th Anniversary Minnesota e-health Summit 2014 St Louis Park, MN

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