1. W ORKGROUP D ISCUSSION Provider Ad Hoc Workgroup, Advisory Committee on Breast Cancer in Young Women March 28, 2014

2. M EMBERS  Generosa Grana*  Brandon Hayes–Lattin*  Renee Nicholas  Wendy Susswein*  Karen Kelly Thomas*  Laura Tillman  JoAnne Zujewski

3. C HARGE – P ART 1  Gather initial background information and advise the Committee regarding behavior change of providers as relates to: 1. Enhancing provider knowledge regarding breast cancer in young women  Assessing gaps, guidelines, and messaging around breast cancer in young women. 2. Improving skills of providers regarding delivery of care to young women at risk (average risk and high risk) of– and/or facing breast cancer (e.g., Survivors).  “Providers” to be defined.

4. P ATIENT P OPULATIONS  Women of Reproductive Age (up to 45 years)  Pre  Diagnosis Average Risk High Risk (including risk for relapse or second primary)  Post  Diagnosis

5. P ROVIDERS  Pre  Diagnosis and Early Diagnosis  General Practice (Primary Care)  Family Practice  Internal Medicine  Obstetrics/Gynecology Primary Care Nurse Practitioners/Physician Assistants High School and College School Nurses

6. P ROVIDERS  Post–Diagnosis Oncologists  Medical Oncology  Surgical Oncology  Radiation Oncology Oncology Nursing Primary Care Providers (including transitions)

7. P ROFESSIONAL S OCIETIES AND N ETWORKS (P OTENTIAL P ARTNERS TO R EACH P ROVIDERS )  American College Health Association ( ACHA )  American Academy of Family Practice ( AAFP )  American College of Physicians ( ACP )  American Congress of Obstetricians and Gynecologists ( ACOG )  American Academy of Nurse Practitioners ( AANP )  American Academy of Physician Assistants ( AAPA )

8. P ROFESSIONAL S OCIETIES AND N ETWORKS  American Society of Clinical Oncology ( ASCO )  American College of Surgeons ( ACoS )  American Society for Radiation Oncology ( ASTRO )  Oncology Nursing Society ( ONS )  National Comprehensive Cancer Network ( NCCN )

9. A VAILABLE G UIDELINES Screening  ACOG  ACP  AAFP  ASCO  ACoS  NCCN Practice  ACHA  AAFP  ACOG  ACP  ASCO  ACoS  ASTRO  NCCN  ONS

10. O PPORTUNITIES FOR E NGAGEMENT  Sexually active women  Pregnant women  During Breastfeeding  Taking a Family history  Assessing chronic medical conditions (high blood pressure, diabetes, hyperlipidemia)

11. NCCN C LINICAL P RACTICE G UIDELINE : P RE –D IAGNOSIS  Breast Cancer Screening and Diagnosis Normal Risk, Modified Gail Model Increased Risk Positive Physical Findings  Palpable Mass Age >29  Palpable Mass Age <30  Breast Cancer Risk Reduction Familial Risk Assessment Risk Reduction Therapy

12. D ISCUSSION Q UESTIONS FOR G ROUP  How can we better assess the knowledge base of providers?  How can we assure appropriate resources are developed and used? How can we integrate with quality assessment/improvement efforts?  How can we better assess provider skills in resource utilization and communication?  How can we improve patient access and utilization?

13. H EALTHCARE P ROVIDERS C URRENT S TATUS Genetic Counseling Services Variation in: Referral for genetic consultation Appropriateness of referrals Communication of risk information Work done by CDC researchers: DOCstyles 2007 National Survey (Bellcross et al) Vignette based survey instrument (Trivers et al)

14. H EALTHCARE P ROVIDERS C URRENT S TATUS Bellcross et al. Am J Prev Med 2011  Determine, among U.S. primary care physicians, the level of awareness and utilization of BRCA testing and the 2005 us preventive services task force recommendations.  Web based survey “DocStyles 2007” – CDC licensed data  Random sample of 3115 physicians. Response rate 48%  Asked about actually ordering at least 1 test – did not ask about referral for genetic counseling / testing, provision of counseling or “implementation of management recommendations”  Potential use of DocStyles for assessment of chemoprevention & screening recommendation use???

15. H EALTHCARE P ROVIDERS C URRENT S TATUS Trivers et al. Cancer 2011, Annals of Internal Medicine 2012  Vignette  based survey instrument  High risk women – 41% of physicians referred for counseling, testing and ovarian screening  Average risk women – 22% of women still referred for genetic counseling

16. H EALTHCARE P ROVIDERS C URRENT S TATUS Chemoprevention  NHIS 2000 data  >10million women aged 35  79 risk eligible for tamoxifen  >2million White women risk / benefit analysis positive  Actual use:  2000 – 0.2%  2005 – 0.08%

17. C URRENT S TATE P ATIENTS  Uptake rates for breast cancer genetic testing.  Olaya et al. Am Journal of Surgery, 2009.  Half of patients referred for genetic testing do not undergo testing.  Unrelated to insurance coverage for testing.  Affected by weather previously diagnosed or not and by educational level.  Need for counseling instruments to improve testing rates.

18. P OTENTIAL O PPORTUNITIES TO I MPACT H EALTHCARE P ROVIDERS I. Training of students, residents & other healthcare providers (NP, PA)  Modules to be used in training – genetics, communication skills, clinical skills II. Training of Practicing Clinicians  Initial practice Certification Process  Maintenance of Certification  Ongoing CME III. Role of EMR

19. O NGOING W ORK H EALTHCARE P ROVIDERS CDC  Office of Public Health Genomics & National Cancer Education & Early Detection Program  2003 – Michigan & Oregon pilot programs  2011 – Michigan, Oregon & Georgia programs  Focus: Education (patient & provider), surveillance and policy  Body Talk  Decision support tool – aimed at providers & patients

20. O NGOING W ORK H EALTHCARE P ROVIDERS NIH  eDoctoring Program (Dr. Michael Wilkes)  Interactive online educational tool  Topics – ethics, genetics, clinical management, epidemiology, communication skills  Potential users – students (medical & nursing), residents, primary care providers  Potential use by credentialing bodies for certification and licensure (ex., California – palliative care and end of life)

21. O NGOING W ORK H EALTHCARE P ROVIDERS Agency for Healthcare Research & Quality Resources (AHRQ)  Effective Healthcare Program – Create educational material for patients & healthcare providers.  The ACTION Network ( Accelerating Change and Transformation in Organizations and Networks )  Test and disseminate defined strategies.

22. P ROVIDER W ORKING G ROUP Phase I : Recommendations to Committee Phase II: How to foster those recommendations Additions to group: Representatives from CDC (Katrina Trivers) Representatives from 3 state programs Other partners

23. S UMMARY Guidelines have been developed to guide healthcare providers on issues related to genetic testing, risk assessment and chemoprevention strategies for young women at risk for breast cancer. Significant gaps exist and additional research is needed to assess current level of knowledge of primary care providers and to fill in the gaps left by the above referenced studies. Information thus learned could then be used to develop focused strategies to target healthcare providers.

24. S UGGESTIONS TO C OMMITTEE 1. Conduct assessment of current level of knowledge and practice of primary care providers around topic of breast cancer in young women Work with primary care societies (Medical and Nursing) to develop and disseminate survey instrument. Use eDoctoring tool to assess both knowledge and practice and impact of education. Assess use of tools available to CDC DocStyles Ongoing genomics initiatives

25. S UGGESTIONS TO C OMMITTEE 2. Foster development of educational tools targeted to education of healthcare providers at various points of training: Assess potential use of certification and recertification requirements. Assess and expand tools such as eDoctoring to both study the needs of providers and to meet those needs.

26. S UGGESTIONS TO C OMMITTEE 3. Continued study of Body Talk as a tool focused on both patients and healthcare providers: Potential use of AHRQ Action Network to study its effectiveness in both target groups. Search for effective dissemination strategies – potential use of AHRQ Effective Healthcare Program.

27. S UGGESTIONS TO C OMMITTEE 4. Potential collaboration between CDC and AHRQ on EMR build out and evaluation. 5. Collaborate with other initiatives addressing Healthcare providers and topic of Breast Cancer in Young Women.

28. P HASE II 1. who are the providers…… Healthcare providers of multiple disciplines Providers at various points in training 3 rd party payors who increasingly define coverage…. 2. Education & Practice gaps - surveys Work by CDC; Work by 3 state projects 3. Education / Decision Support Tools 3 state pilot – web based CME program; live conference CDC ---Inside Knowledge Campaign (gyn cancer) ---Know: BRCA Wilkes et al – eLearning Bright Pink – resident education 4. Dissemination………..

29. F OCUS Survey of healthcare providers – current knowledge & practice -- gaps Whom to Survey (regional / national) How to survey Licensing / certification bodies ABIM, ACOG etc Professional associations State professional societies Dissemination of Education / Decision support tools Residency training / NP /PA training Board certification modules Licensing requirements AHRQ EMR buildout