Reducing Barriers to Risk Appropriate Cancer Genetics Services: Current Strategies

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1 Reducing Barriers to Risk Appropriate Cancer Genetics Services: Current Strategies Kara J. Milliron, MS, CGC Mark D. Pearlman, MD

2 Disclosure I am a contract genetic counselor with Informed DNA, Inc.

3 The Planned Parenthood Approach: Breast Cancer Risk Screening Questionnaire (BRSQ)

4 Why is PP paying so much attention to breast health?

5 Epidemiology of Breast Cancer in the United States Incidence, Mortality, Rates, and Age 5

6 Breast CA Relative to GYN Cancers: Incidence 226,870 88,750

7 Breast CA Relative to GYN Cancers: Mortality 39,510 29,520

8 Rates of Breast Cancer by Age United States Age 75 79: 465 per 100,000 Age 20 24: 1.4 per 100,000 8

9 Who are the Women who Develop Breast Cancer Most are sporadic (i.e., no family hx) 10-15% are familial (gene mutation like BRCA1/2) BRCA gene mutation carriers develop breast cancer more frequently at a younger age (<50 years)

10 BRSQ 10

11 BRSQ 11

12 Follow average risk screening recommendations until genetic counseling done. 12

13 Follow average risk screening recommendations until genetic counseling done. 13

14 If NO or DON T KNOW to ALL questions Average risk screening CBE every 1-3 years ages 20-39; annually age 40+ Mammograms annually starting at age 40 Self breast awareness Follow average risk screening recommendations until genetic counseling done. 14

15 Alternative Ways To Deliver Genetic Counseling

16 Telephonic Genetic Counseling: A Proven Approach , Informed Medical Decisions, Inc.

17 InformedDNA Fast Facts Largest Independent Genetic Counseling Provider Network Deliver genetic counseling via telephone or videoconferencing Deep expertise across specialties/subspecialties Rigorously follow national guidelines and standards In-network services for more than 60 million lives Contracts with major national and regional health plans , Informed Medical Decisions, Inc.

18 Why remote genetic counseling? , Informed Medical Decisions, Inc.

19 National Guidelines Emphasize Role of Genetics Specialist A genetic counselor should be involved early in counseling patients who (potentially) meet criteria for an inherited syndrome. Genetic counseling is advised when genetic testing is offered. National Comprehensive Cancer Network, 2011 Obstetrician-gynecologists should recognize that genetic counselors are an important part of the health care team and should consult with them and refer as needed. American College of Obstetricians and Gynecologists, 2008 If the electrophysiologist or cardiologist is not equipped to discuss these issues, genetic counseling should be done in partnership with genetic counselors, nurse geneticists, and/or geneticists. Heart Rhythm Society, 2011 GOAL: Increase the proportion of women with a family history of breast and/or ovarian cancer who receive genetic counseling. Healthy People 2020 Goals , Informed Medical Decisions, Inc.

20 Physician Confidence with Molecular Diagnostic Tests I am confident I can Physicians Explain test results to my patients 46% Identify appropriate patients for testing 45% Understand and interpret the rest results 42% Choose the right test 35% Choose which lab to send tests to 30% Determine if the test is covered by insurance 24% Determine the right insurance codes 23% Jerry Coamey, CAHG Landmark Physician Study , Informed Medical Decisions, Inc.

21 Fewer than 3,500 board-certified GCs in U.S. Insufficient Access to Genetics Experts Fewer than 2,000 board-certified medical geneticists in the U.S. Political as well as geographical barriers , Informed Medical Decisions, Inc.

22 Telephonic Delivery is a Proven Service Model Nearly all aspects of telephone genetic counseling parallel face-to-face counseling Telephone genetic counseling allows for comprehensive service delivery Peshkin et al. (2008) Genetic Testing 12(1): When given an option, patients often chose to receive genetic counseling over the phone rather than in person No difference in satisfaction Higher satisfaction associated with shorter wait time Baumanis et al. (2009) J Genet Counsel 18: Telephone genetic counseling is equally as effective as face-to-face counseling It will be increasingly critical to develop approaches to extend the reach and efficiency of counseling such as telephonically, and lower costs while increasing reimbursement , Informed Medical Decisions, Inc.

23 Patient Benefits Ø Travel Day, Evening, Weekend Spanish, ASL and Most Other Languages Superior Customer Service Family Appointments Genetic Sub- Specialists , Informed Medical Decisions, Inc.

24 Physician Benefits Provide Genetic Services Access to Genetics Experts Retain Patient Stewardship Hands-off Genetics Care Summary Report Reduced Overhead , Informed Medical Decisions, Inc.

25 Challenges to the Virtual Environment Quality assurance Staff training Process Telephone counseling skills Genetic testing logistics Staff communication Reimbursement , Informed Medical Decisions, Inc. 25

26 Quality Assurance States currently issuing licenses CA, DE, IL, IN, MA, NM, OK, TN, SD, UT, WA States with bills passed/in rulemaking HI, NJ, PA States with a licensure bill introduced FL, RI, MI, MN, NY, TX, WI States preparing to introduce bill CT, ID, KS, MD, MO, NE, NH, OH, OR, VA States not currently engaged in Licensure activity AL, AK, AZ, AR, CO, GA, IA, KY, LA, ME, MS, MT, NV, NC, ND, SC, VT, WV, WY o o o Standard operating procedures with rigorous quality control Escalation of complex cases All recommendations follow national guidelines , Informed Medical Decisions, Inc.

27 Telephone Counseling Skills Communication is very similar to face-to-face counseling Clear contracting helps set expectations that telephone consult is a medical appointment Barriers are exacerbated over the phone Targeted psychosocial assessment helps compensate for lack of non-verbal cues , Informed Medical Decisions, Inc.

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29 Provider and Patient Education Materials 29

30 Secure Patient Portal

31 Summary Report , Informed Medical Decisions, Inc.

32 Staff Communication Barriers Virtual environment Various work schedules across all US time zones Pros and cons of Solutions Regular team meetings Built in QC process for complex cases Staff education about communication methods On-call GC Open-door communication policy , Informed Medical Decisions, Inc.

33 Reimbursement Direct insurance billing; contracts with national and regional health plans Not a Medicaid/Medicare provider Client strategies to provide uniform care regardless of insurance , Informed Medical Decisions, Inc.

34 , Informed Medical Decisions, Inc.

35 Genes: The Link to Our Past The Bridge to Our Future: