1. Academic Practice Partnerships Kerry Silvey & Nan Newell Oregon Public Health Genetics Program April 28, 2008

2. Overview Partnership with Oregon Health and Science University (OHSU) Education & Training At universities For public health Investigations and publications with academic partners Genetic privacy for Oregonians Advisory committee membership

3. Partnership with OHSU Genetics Program is a formal partnership PH Office of Family Health and OHSU Center for Children and Youth with Special Health Needs We contract with faculty member Kerry Silvey part time

4. Education and Training at Universities Combined MPH program – Collaboration among: OHSU Oregon State Univ Portland State Univ Mentoring students/ interns Presentations and posters at annual MPH symposia

5. Education and Training at Universities Genetics grand rounds at OHSU Telemedicine to improve access to genetic services Kaiser family history project Talks at other Oregon institutions Western Oregon University Linfield College University of Portland Pacific University

6. Education and Training for Public Health Workforce Genetics, environment, and cancer risk Dr. Joanna Cain, Director of Women’s Health, OHSU

7. Education and Training for Public Health Workforce Obesity, nutrition, and nutrigenomics Dr. Karen Edwards, Director of the Center for Genomics and Public Health, U. of Washington

8. Education and Training for Public Health Workforce Colon cancer and family history Barbara Pettersen, Genetic Counseling of Central Oregon

9. Education and Training for Public Health Workforce How do the American people feel about a biobank? Portland one of five cities included in public assessment using town hall meetings Dr. Kathy Hudson, Director of the Genetics and Public Policy Center, Johns Hopkins University

10. Education and Training for Public Health Workforce Fetal Alcohol Syndrome & the Genetics of Alcoholism September 2004 Kerry Silvey - Public Health Genetics Specialist Kiley Ariail - State Genetics Program Coordinator

11. Investigations with Academic Partners With an MD/MPH intern from OHSU, FQHC study investigating family history collection

12. Investigations with Academic Partners Kaiser Permanente Qualitative study on how primary care providers collect and use family history information in the Kaiser system. Providers also evaluated the CDC Family Healthware TM tool Manuscript in preparation University of Washington Using PRAMS, determine public awareness of prenatal testing Are there differences in awareness between rural and urban areas? Preliminary results presented at the Public Health Genomics Summit in Atlanta, January 2008

13. Investigations with Academic Partners OHSU Genetics and telemedicine project – Brought together a physician, a nurse, a genetic counselor, and a nutritionist to review 23 potential rural genetic cases using telemedicine Genetics Program contracted for a literature review: Use of family history and modifiable risk factors to reduce the incidence of chronic diseases

14. Investigations with Academic Partners OHSU, con’t A Model Framework for Integrating Genomics into Public Health Programs Creation of a genomics integration model framework for public health programs based on the Stages of Change model of individual behavior change. The model serves as a guide to program planning and evaluation. Results presented at the Public Health Genomics Summit in Atlanta, January 2008. Manuscript in preparation.

15. OCTRI Grant Application Oregon Clinical Translational and Research Institute (OHSU and Kaiser) To study family history practice and use of informatics in medically underserved patient populations. Population: Federally Qualified Health Centers (FQHCs) in the Oregon Community Health Information Network (OCHIN). Will identify salient themes, clinician variability, and consensus relating to family history and clinical decision support.

16. Genetic Privacy for Oregonians Oregon passed a genetic privacy law in 1995 Mandated an advisory committee to assess the implementation and propose updates as needed Members include people from OHSU, PSU

17. Genetic Privacy for Oregonians Educate IRBs

18. Genetic Privacy for Oregonians Report to legislature every other year

19. Genetic Privacy for Oregonians Develop fact sheets for researchers and the public

20. Advisory Committee Membership with Academic Partners Breast Cancer Prevention Colorectal Cancer Prevention Oregon Diabetes Coalition Oregon Newborn Screening Program Western States Genetic Services Collaborative Newborn Screening for Cystic Fibrosis Oregon Medicaid Genetic Services Genetic Privacy and Research

21. Conclusion Our academic partnerships have been very productive. Partnerships have brought multiple organizations together to leverage resources and provide diversity. We have made progress on: Understanding how family history is used in the clinic Helping clinicians and researchers in navigating the Genetic Privacy Law Bringing awareness of how genomics fits into day-to- day public health Understanding how genetic and prenatal information is used in rural areas