1. Maximizing Access to Genetic Services Using State and Federal Resources Sylvia M. Au, MS, CGC Lianne Hasegawa, MS, CGC Anne Spencer, MS, CGC

2. Developing A Regional Practice Model for Remote Delivery of Genetics Consultations via Telehealth Sylvia M. Au, M.S., C.G.C. Co-Director Western States Genetic Services Collaborative (WSGSC) Hawai`i Department of Health sylvia@hawaiigenetics.org

3. What Authority Provides for the Regional Genetics and Newborn Screening Collaboratives? Title XXVI of the Children’s Health Care Act of 2000 “Screening for Heritable Disorders”, establishes the Heritable Disorders Program to improve the ability of States to provide newborn and child screening for heritable disorders. In fiscal year 2004, Congress appropriated funds to implement the priorities of the HDP as indicated in the Title XI, Public Health Services Act. The legislation created a grant program and an Advisory Committee to the Secretary of the federal Department of Health and Human Services.

4. What Authority Provides for the Regional Genetics and Newborn Screening Collaboratives? “In General, The Secretary shall award grants to eligible entities to enhance, improve or expand the ability of State and local public health agencies to provide screening, counseling or health care services to newborns and children having or at risk for heritable disorders.”

5. What are the Regional Genetics and Newborn Screening Collaboratives? Funded by Health Resources and Services Administration Maternal and Child Health Bureau, Genetic Services Branch. Branch Chief: Michelle Puryear, MD, PhD Project Officer: Jill Shuger, MS There is an Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children There is one National Coordinating Center administered by the American College of Medical Genetics.

6. What are the Regional Genetics and Newborn Screening Collaboratives? The country is divided into 7 Regional Collaboratives. One of the main goals of the Collaboratives is to improve access to genetic and newborn screening services and activities by the sharing of resources within and among the regions.

7. The Regional Genetics Collaboratives Region 1:New England Regional Genetics Group (CT, MA, ME, NH, RI, VT) Region 2:New York-Mid Atlantic Consortium for Genetic & NBS Services (DC, DE, MD, NY, NJ, PA, VA, WV) Region 3:Southeastern Regional Genetics Group (AL, FL, GA, LA, MS, NC, PR, SC, TN, VI) Region 4:The Region IV Genetics Collaborative ( IL, IN, KY, MI, MN, OH, WI) Region 5:Heartlands Regional Genetics & NBS Collaborative (AR, IA, KS, MO, ND, NE, OK, SD) Region 6:Mountain States Regional Genetics Collaborative Center (AZ, CO, MT, NM, NV, TX, UT, WY) Region 7:Western States Genetic Services Collaborative (AK, CA, Guam, HI, ID, OR, WA)

8. Western State Genetic Services Collaborative Includes Alaska, California, Guam, Hawaii, Idaho, Oregon and Washington Hawaii Department of Health is the grantee and administers the award. The co-directors of the project are Sylvia Au and Kerry Silvey. The WSGSC is unique because the leadership of the Collaborative is based in the genetics, newborn screening and/or Title V programs of each state/territory health department.

9. Western State Genetic Services Collaborative Who is Involved: Public Health Departments Geneticists Specialists Families Primary Care Providers Evaluators Third Party Payers Related Programs/Organizations

10. www.westernstatesgenetics.org

11. Western States Genetic Services Collaborative What we are doing to improve access to genetic services: Practice Model for the provision of genetic services  Telemedicine and in-person, outreach clinics for families outside of metropolitan areas  Time studies  Reimbursement data collection  Evaluation tools

12. Realized that genetics would be used as the “model” program to test the clinical use of telemedicine in Oregon, Hawai`i, and Idaho. Equipment, connections and software may have changed or need to be updated between time of application and implementation of the activity. Telehealth Challenges

13. During the first three years of the project, funding for a pilot telemedicine project in Washington ended and was not found to be feasible at this time. As the project becomes higher profile, more people are coming up with barriers (e.g. extra paperwork, increased scrutiny, additional malpractice issues). Telehealth Challenges

14. Telehealth Successes Had Existing Resources Can use information from Washington Project to avoid identified “pitfalls”. Stanford Medical Center Genetics Program has been successfully using telehealth to provide genetics consultations and can provide technical assistance. Hawai`i was already providing telehealth to provide nutritional consultations for children with metabolic disorders.

15. Telehealth Successes Had Existing Resources The equipment for telehealth is available in Oregon, Hawai`I, Idaho, Alaska and Guam already and most are via secure internet connections. On-site facilitators are public health nurses in Oregon, public health nurses or social workers in Hawai`i and a genetic counselor in Idaho.

16. Telehealth Successes Interest All states in the region and Guam are interested in telehealth. Telehealth is becoming more high profile for policymakers –Hawai`i legislators passed legislation to mandate that health insurers cover telehealth consultations –Alaska enacted legislation to ensure that Medicaid reimburses telehealth at the same rate as for in-person visits. Many of the states in the region received the FCC telehealth infrastructure building funding.

17. Telehealth Successes Available Tools to Improve Telemedicine We have developed extensive evaluation activities and tools to evaluate in-person, telemedicine and outreach clinic visits which include:  Patient/Family satisfaction, cost and demographics survey  Specialist survey  Facilitator survey  Referring physician survey  Collection of cost and reimbursement data

18. Telehealth Successes Legal Issues No cross state border (licensing and malpractice) issues anticipated for current practice models. Oregon metabolic geneticist is licensed in Idaho. Hawai’i geneticist is licensed in Guam. Washington geneticist is licensed in Alaska.

19. Real World Results Experience from the originating site – Anne Spencer Experience from the remote site – Lianne Hasegawa Results from satisfaction surveys – Lianne Hasegawa

20. Acknowledgements Kerry Silvey, MA, CGC Co-Director Western States Genetic Services Collaborative Lianne Hasegawa, MS, CGC Hawai`i Project Coordinator Western States Genetic Services Collaborative Jacquie Stock, MPH Research Associate Center for Children with Special Needs Washington State Anne Spencer, MS, CGC Idaho Genetic Counselor Cary Harding, MD Oregon Geneticist Laurie Seaver, MD and Julie Ireland, MD Hawai’i Geneticists Michele Meada Hawai’i Metabolic Dietician

21. This project is a cooperative agreement (#U22MC03961 ) between the Health Resources and Services Administration, Maternal and Child Health Bureau, Genetic Services Branch and Hawai`i Department of Health. www.westernstatesgenetics.org

22. …and we are making a difference.

23. Questions?