oregon genetics program: enhancing breast cancer genomic practices
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Oregon Genetics Program: Enhancing Breast Cancer Genomic Practices. Summer Lee Cox, MPH Advisory Committee on Breast Cancer in Young Women January 9, 2014. Oregon Genetics Program. Genetics manager Oversees the Breast and Cervical Cancer Program (BCCP), WISEWOMAN, and Genetics - PowerPoint PPT PresentationTRANSCRIPT
Oregon Genetics Program: a state perspective
Oregon Genetics Program: Enhancing Breast Cancer Genomic Practices
Summer Lee Cox, MPHAdvisory Committee on Breast Cancer in Young WomenJanuary 9, 2014
1Oregon Genetics ProgramGenetics managerOversees the Breast and Cervical Cancer Program (BCCP), WISEWOMAN, and GeneticsCenter for Prevention & Health Promotion, Oregon Public Health Division, Oregon Health AuthorityGenetics missionTo promote the health, well-being, and quality of life of Oregonians using up-to-date knowledge of genomicsGenetics fundingEnhancing Breast Cancer Genomic Practices Through Education, Surveillance, and Policy cooperative agreement with the CDC Division of Cancer Prevention and Control2EducationSurveillancePolicyCollect and utilize population level data to evaluate the use of evidence-based breast cancer genomics applications.Promote public policies that increase the utilization of genomic services for hereditary breast cancer recommended by the USPSTF and NCCN.Increase use of clinical practices recommended in the USPSTF and NCCN on the use of BRCA testing.PREVENTION & EARLY DETECTIONSurveillance, Education & Policy Goals3Potentially Preventable BRCA related Breast and Ovarian Cancers, Oregon, 2005-200914,270Breast Cancer Cases1285-999BRCA related Breast Cancer Cases243-999Potential BRCA related Breast Cancers Prevented1,484Ovarian Cancer Cases1148-223BRCA relatedOvarian Cancer Cases102-223Potential BRCA relatedOvarian Cancers Prevented>345 - 1,222Potential BRCA related Breast and Ovarian Cancers Prevented2% - 7% estimated BRCA related285% - 100% estimated risk reduction with prophylactic mastectomy310% - 15% estimated BRCA related269% - 100% estimated risk reduction with prophylactic oophorectomy3Additional potential BRCA related breast and ovarian cancers prevented using chemoprevention, increased surveillance, or prophylactic oophorectomy to reduce breast cancer riskData Source: 1. Oregon Cancer Statistics, National Program of Cancer Registries, 2005-2009 2. Bowen, et al. Public health action in genomics is now needed beyond newborn screening. Public Health Genomics 2012; 15(6):327-34 3. United States Preventive Services Task Force, Draft Recommendation Statement, Risk Assessment, Genetic Counseling, and Genetic Testing for BRCA related Cancer, 20134BRCA Cancer Burden in Oregon AdultsData Source: Oregon Genetics Program Report: BRCA 1&2 and MMR Gene Mutations in the Oregon Population: Estimating Mutation Carriers and Referrals for Genetic Services. March, 2011. Not Published.5
6Healthcare Provider Genetics ConfidenceData Source: Oregon Genetics Program, 2010 Healthcare Provider Survey, unpublished.
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Oregon Approach - Surveillance8Oregon Surveillance AccomplishmentsAnalysis of Oregon ongoing BRFSS dataAnalysis of Medicaid claims data, 2007 - 2011Evaluation of state health insurance plan policiesIdentified 2,801 OSCaR cases appropriate for BRCA counseling (2009-2011) Created BRCA surveillance system
9BRCA Testing Study: two armsFirst Arm: Collect a limited data set of patient level information on all patients who seek genetic counseling for HBOCSecond Arm: Survey patients who receive BRCA testingFileMaker based Genetic Information System, GenIS
10BRCA Testing Study: Follow-up SurveyWho first suggested taking the BRCA test?11BRCA Testing Study: Follow-up SurveyTest Results and Feelings12Oregon Approach EducationObjectivesIncrease provider understandingIncrease public knowledgePopulationsPublicAshkenazi Jewish population, general population, fellow public health professionals, cancer survivorsHealthcare Providersprimary careHealth Insurance Companies13Oregon Education AccomplishmentsEducating Ashkenazi Jewish population, general population, public health professionals & cancer survivorsConnecting with people through community presentations, train-the-trainer event, booths at community events, magazine article, family health history challenge, website, OSCaR letters, etcPartnering with health insurance companiesDisseminating information about genetic conditions, genetic counseling & testing, evidence-based guidelines, and resourcesEducating health professionals & others on evidence based guidelines & the appropriate use of genetic services BCCP providers, CD Summary, OSCaR letters, journal article publications, collaboration with MI/GA/NCHPEG14Young Women & the Breast and Cervical Cancer Program (BCCP)Breast cancer screening for low-income, uninsured and underinsured women >40Breast cancer diagnostic services for low-income, uninsured and underinsured women 10,000 interested partiesOregon specific data, USPSTF recommendations, the importance of referral to a genetic specialist, and available resourcesData Source: 2011 Oregon Behavior Risk Factor Surveillance System (BRFSS); CD Summary - BEYOND ANGELINA JOLIE: INHERITED BREAST AND OVARIAN CANCER, Vol. 62, No. 25, December 3, 2013. 17Oregon State Cancer Registry (OSCaR)2009 20011 OSCaR data2,801 individuals with breast cancer at age 50 or younger, triple negative breast cancer, ovarian cancer, or male breast cancer634 different physicians reported these 2,801 cases619 physicians reported other breast cancer casesSurveillance EducationTargeted letters sent to patients and both provider groupsPatient Survey: over 300 and counting!18Oregon Approach - PolicyObjectivesIncrease private health insurance coverage alignment with guidelinesImprove capacity of Oregon Medicaid to follow guidelinesIncrease stakeholder knowledge about genetic counseling licensureCollaborate to include genetic information in the Oregon Comprehensive Cancer Plan (OCCP)ActivitiesWorking with Medicaid Health Evidence Review CommissionEstablishing partnerships with health insurance companiesEducating stakeholders on genetic counselor licensurePromoting the use of evidence based guidelines by healthcare providers & health care systemsEstablishing and maintaining partnerships to promote cancer genetic services
1920Health Insurance Policies: 2012 Survey Findings6/7 written BOC policiesAll cover BRCA test for a person with & w/o cancerAll cover pre & post BRCA counselingAll use guidelines to determine coverage (screening, counseling & testing, and prophylactic measures)All cover increased breast cancer screening, bilateral mastectomy, salpingo-oophorectomy, and hysterectomy for women with cancerCoverage for ovarian cancer screening and chemoprophylaxis is inconsistent for women with cancerCoverage for increased breast cancer screening, bilateral mastectomy, salpingo-oophorectomy, hysterectomy ovarian cancer screening, and chemoprophylaxis is inconsistent for women without cancer4/7 use NCCN guidelines; 1/7 use USPSTF recommendations21Health Insurance Policies:Surveillance Education & PolicyCurrent ActivitiesSurvey report and memo highlighting specific findings about each company to medical directorIndividual meetings (in process of being set-up) with medical director and policy staffShare informational packet about HBOC, evidence-based guidelines, and resourcesReview 2014 policiesPossible Next StepsMeeting with insurance commissionerParticipation in local/regional health insurance meetings22Lessons LearnedSurveillance Education & Policy SurveillanceMeasure to achieveStarting surveillanceEducation for the spectrum of stakeholdersPublic, Providers, Insurers, Policy Makers, and othersCollaboration & PartnershipsFinding the wheelsLeveraging resourcesIn state & nationally23Alicia Parkman, MAGenetics [email protected] Kovak, MS, CGCGenetics Clinical [email protected]
Rani George, MPHGenetics Program [email protected] Lee Cox, MPHGenetics Program [email protected]
Oregon Genetics Programhttp://www.healthoregon.org/geneticsKristin Kane, MSWBCCP/WW/GEN Program [email protected]