1 Population Science SIG: Vision and Goals Paul K. Courtney Pop Sci SIG Lead Dartmouth College/Norris Cotton Cancer Center

2 National Health Information Infrastructure (NHI) Report issued in November 15, 2001 Authored by the National Committee on Vital and Health Statistics Called for strategic use of information infrastructure to enable 21 st Century biomedical and public health science

3 Continuum of Care Zapka, J. G., Taplin, S. H., Solberg, L. I. and Manos, M. M. A Framework for Improving the Quality of Cancer Care: The Case of Breast and Cervical Cancer Screening. Cancer Epidemiology, Biomarkers & Prevention, 12: 4–13, 2003

4 Windows of Opportunity in War against Cancer Hesse, B. W Harnessing the Power of an Intelligent Health Environment in Cancer Control. In R.G. Bushko (Ed.), Future of Intelligent and Extelligent Health Environment, Bushko, IOS Press: Amsterdam.

5 Population Health: Current Landscape Public Health Surveillance National Surveillance Data (e.g., NHIS, BRFSS, NHANEs) Routine behavioral surveys (e.g., HINTS) Field based data University Laboratories Individually published papers Locally maintained data sets Medical Research Settings Patient Charts Clinical trials data Local Interventions

6 Molecular Medicine: Personalized Approaches

7 EHRPHR Population Sciences Health Care System Translational Medicine Bench to Bedside How Information Technology Is Integrating and Transforming Population Sciences Disease surveillance Population Data Information on communities, policies, disease rates, health interventions Behaviors GIS Outcomes Basic research Genomics “Omics” IND’s Biomarkers Tissue repositories Pre-clinical research Patient care Doctors RHIO’s, HMO’s Clinical Trials Medical Imaging Rx, Dx

8 Obstacles to Population Health Discontinuity among levels of analysis (cell  person  system) Disincentives for “team science” Absence of shared ontologies and vocabularies Balkanized knowledge bases Lack of a coordinated “presentation layer” to policy makers, planners Redundancy and lack of coordination in field-initiated research Excessive time lag from discovery to delivery (AHRQ estimates 18 years)

9 Use Case for Project Proposal

10 Discussion Points What are the sociotechnical solutions to the “common data element” problem? E.g., –Incentivized data sharing through initiatives? –Specialized caDSR? –Vetting bodies for standards in population science? Where are targets of opportunity? –Federal surveillance? –Clinical protocols? –Behavioral measures in electronic health records?

11 Discussion Points What tools are needed to enable transformations in: discovery, visualization, decision support, fusion, and policy planning? Can Pop Sci SIG create a “blueprint” to guide growth strategically? –Overall vision? –Needed standards investments? –Needed tool investments? –Ethical, social, and legal concerns? –GRID level use case scenarios