1. Metadata for Cancer Control and Population Sciences Paul K. Courtney, MS NCI/DCCPS SAIC, Inc., NCI-Frederick

2. Overview DCCPS Program Support GEM and NCCOR examples of metadata of interest to behavioral medicine researchers

3. DCCPS Program Support Applied Research Program Behavioral Research Program Epidemiology and Genetics Research Program Surveillance Research Program OD –Dissemination and Implementation –Health Disparities

4. OD –Dissemination and Implementation Science –Health Disparities –Cancer Survivorship ARP –Instrument Development & Testing for Quality of Life Measurement –Patient-centered Care & Communication –Health-related Quality of Life Assessment & Application –Quality of Care BRP –Behavioral Measures –Health Communication –Biobehavioral Research –Evaluation Instruments –Surveys & Databases EGRP –Cancer Epidemiology Research –Epigenomics and Epigenetics –Pharmacoepidemiology and Pharmacogenomics –Public Health Genomics SRP –Data Analysis and Interpretation –Data Modeling OD Dissemination and Implementation Science Health Disparities Cancer Survivorship ARP Instrument Development & Testing for Quality of Life Measurement Patient-centered Care & Communication Health-related Quality of Life Assessment & Application Quality of Care BRP Behavioral Measures Health Communication Biobehavioral Research Evaluation Instruments Surveys & Databases EGRP Cancer Epidemiology Research Epigenomics and Epigenetics Pharmacoepidemiology and Pharmacogenomics Public Health Genomics SRP Data Analysis and Interpretation Data Modeling Statistical Methodology and Applications Surveillance Systems DCCPS Research by organizational unit

5. Individual – Interior View: Self- report measures: pain, quality of life, patient-physician communications Individual – Exterior View: Observational assessments and measures: genomic analysis, physiological metrics and biomarkers Collective – Interior View: Psychosocial and cultural determinants of health: social norms, familial behavior patterns Collective – Exterior View: Built environment, exposure to environmental toxins, health care delivery processes Self-report measures: pain, quality of life, patient-physician communications Observational assessments and measures: genomic analysis, physiological metrics and biomarkers Psychosocial and cultural determinants of health: social norms, familial behavior patterns Built environment, exposure to environmental toxins, health care delivery processes Interior view Collective Individual Exterior view Quadrants Perspective of Measures

6. The Cancer Control Continuum

7. GEM: Grid Enabled Measures

8. GEM: Measures – General Information Tab

9. NCCOR Measures Registry – example metadata

10. Thank You Paul K. Courtney SAIC-Frederick, Inc., NCI-Frederick Frederick, Maryland 21702 NCI/DCCPS Biomedical Informatics Coordinator courtneypk@mail.nih.gov This project has been funded in whole or in part with federal funds from the National Cancer Institute, National Institutes of Health, under Contract No. HHSN261200800001E. The content of this publication does not necessarily reflect the views or policies of the Department of Health and Human Services, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government..

11. Data Accessibility Data Accessibility = Data Standards + Data Visibility Data Accessibility = Metadata Standards + Metadata Visibility Metadata Accessibility

12. Metadata Standards http://upload.wikimedia.org/wikipedia/commons/thumb/a/a6/Yale_card_catalog.jpg/600px-Yale_card_catalog.jpg http://www.flickr.com/photos/tryingyouth/2456237/ http://reprog.files.wordpress.com/2010/04/catalog-card-loc-90.jpg?w=441&h=264 http://www.collectiveaccess.org/content/en/images/03_standards.jpg