Academic Practice Partnerships

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 HealthwareTM 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