Transformed (transforming) Health Care System Connie White Delaney, PhD, RN, FAAN, FACMI School of Nursing Professor & Dean Academic Health Center Director, Biomedical Health Informatics (BMHI) Associate Dir. CTSI-BMI Nursing Knowledge: Big Data Research for Transforming Healthcare Big Data Invitational 2013

Current State of Health Care System Challenges of healthcare access, quality, safety, efficiency, and effectiveness Recent financial crisis within the context of an annual cost of medical errors Influx of patients in 2014 of ~32 million Americans Big Data Invitational 2013

Vision for the Future Health Care System Health IT & Patient Safety and-Patient-Safety-Building-Safer-Systems-for-Better-Care.aspxhttp:// and-Patient-Safety-Building-Safer-Systems-for-Better-Care.aspx Computational Technology for Effective Health Care Digital Infrastructure for the Learning Health System Health-System.aspx Health-System.aspx Best Care at Lower Cost: The Path to Continuously Learning Health Care in America Lower-Cost-The-Path-to-Continuously-Learning-Health-Care-in- America.aspx Lower-Cost-The-Path-to-Continuously-Learning-Health-Care-in- America.aspx Big Data Invitational 2013

Continuously Learning Health System Vision Generate and apply the best evidence for the collaborative health care choices of each patient and provider; Drive the process of new discovery as a natural outgrowth of patient care Ensure innovation, quality, safety, and value in health care. (Charter of the Institute of Medicine Roundtable on Value & Science-Driven Health Care) 4

Big Data Invitational Federal Health IT Strategic Plan HealthIT.gov

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 Clinical and Translational Science Awards (CTSAs)

Big Data Invitational 2013 Health & Nursing Knowledge Discovery & Dissemination Bench Bedside Practice Community

CONNECT WITH CTSI CONNECT WITH CTSA NURSE SCIENTIST SPECIAL INTEREST GROUP Big Data Invitational 2013

NINR Strategic Plan: Innovation NINR will invest in research that: Develops new technologies and informatics-based solutions that promote health, including comprehensive high-throughput technologies Develops and creatively applies new and existing knowledge to the implementation of health information technology, including electronic health records Expands knowledge and application of health care technologies to facilitate decision support, self-management, and access to health care Uses genetic and genomic technologies to advance knowledge of the “symptome,” including the biological underpinnings of symptoms associated with chronic illness Encourages risk-taking, innovation, re-invention, and creativity, including high-risk/high-return concepts Big Data Invitational 2013

Nursing informatics agenda for 2008–18 must expand users of interest to: Include interdisciplinary researchers Build upon the knowledge gained in nursing concept representation to address genomic and environmental data Guide the reengineering of nursing practice Harness new technologies to empower patients and their caregivers for collaborative knowledge development Develop user configurable software approaches that support complex data visualization, analysis, and predictive modeling Facilitate the development of middle-range nursing informatics theories Encourage innovative evaluation methodologies that attend to human- computer interface factors and organizational context Nursing Research Bakken et al In McDaniel, A. & Delaney, C. (Guest Editors) Informatics: Science and Practice. Nursing Outlook, 56(5), Big Data Invitational 2013

microscopicmacroscopic molecular and cellular processes tissues & organs individual patients populations Human Health & Disease [translational bioinformatics] Clinical Research Informatics Consumer Health Informatics REDCap (Research Electronic Data Capture) UMN Profiles Big Data Invitational 2013

UMN AHC IE Platform Clinical Data Repository (CDR) Big Data Invitational 2013

UMN AHC IE Platform Clinical Data Repository (CDR) Extended Clinical Data Other Clinical Partners Research Data Marts Big Data Invitational 2013

14 Vision for Nursing Data in a Clinical Data Warehouse Clinical Data NMDS Management Data NMMDS Other Data Sets Continuum of Care Big Data Invitational 2013

NIH BIG Data Centers news/health/jul201 3/nih-22.htm news/health/jul201 3/nih-22.htm Big Data Invitational 2013

Nursing Minimum Data Set (NMDS) Werley, HH & Divine, E., & Zorn, C. (1988). Nursing Minimum Data Set Data Collection Manual. University of Wisconsin, Milwaukee, WI Big Data Invitational 2013

Nursing Management Minimum Data Set (NMMDS) Huber D, Schumacher L, Delaney C. Nursing management minimum data set (NMMDS). J Nurs Adm. 1997;27(4):42-48.

Call to action – Roadmap Standardized representation of nursing knowledge Integration within broader essential spectrum of clinical care data into clinical data warehouses Engage in big data science for discovery of new knowledge that enables evidence-based practice. Big Data Invitational 2013