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Genetics Workforce Concern: Limited Supply of Medical Geneticists Judith A. Cooksey, MD, MPH Miriam Blitzer, Gaetano Forte, Judith Benkendorf, Ed Salsberg.

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Presentation on theme: "Genetics Workforce Concern: Limited Supply of Medical Geneticists Judith A. Cooksey, MD, MPH Miriam Blitzer, Gaetano Forte, Judith Benkendorf, Ed Salsberg."— Presentation transcript:

1 Genetics Workforce Concern: Limited Supply of Medical Geneticists Judith A. Cooksey, MD, MPH Miriam Blitzer, Gaetano Forte, Judith Benkendorf, Ed Salsberg University of Maryland Baltimore, University of Albany at State University of New York, University of Illinois at Chicago AcademyHealth Annual Research Meeting June 6, 2004 San Diego CA

2 Assessing Genetic Services and the Health Workforce (2001-2004) Purpose of Overall Research Project: To describe current models for organizing and delivering clinical genetic services To describe current models for organizing and delivering clinical genetic services To describe roles of health professionals in services To describe roles of health professionals in services To identify the factors driving change and demand for services To identify the factors driving change and demand for services To establish a foundation for further health services research in genetic/genomics clinical services To establish a foundation for further health services research in genetic/genomics clinical services

3 Research Design Modeled after Center for Health Systems Change Community Tracking Study (www.hschange.org)Modeled after Center for Health Systems Change Community Tracking Study (www.hschange.org)www.hschange.org National survey researchNational survey research In-depth case studies of four metropolitan marketsIn-depth case studies of four metropolitan markets Assessing baseline and changeAssessing baseline and change

4 Overview Genetics Services and Models of CareGenetics Services and Models of Care Clinical Genetics Specialty WorkforceClinical Genetics Specialty Workforce Findings from Survey of MD GeneticistsFindings from Survey of MD Geneticists Workforce Planning and Policy IssuesWorkforce Planning and Policy Issues

5 Diagnosis, Risk Assessment, Counseling, Management Adult onset conditions Familial cancer risk assessment Single gene conditions Rare genetic conditions Reproductive Counseling Counseling

6 Clinical Genetic Testing Services Test processingTest processing Results reportingResults reporting Interpretation of resultsInterpretation of results Other services - counselingOther services - counseling

7 Models of Care for Clinical Genetics 1.Traditional genetics clinic - geneticists and genetic counselors 2. Combined clinics - medical specialist, geneticist, genetic counselors, others 3.Other medical specialist provides genetic services to patient (not family) - Obstetrician (MFM), oncologist, etc - often genetic counselors

8 Models of Care for Clinical Genetics 4. Public Health/State Sponsored Screening and Services - newborn screening, genetic outreach clinics 5. Laboratory Sponsored Services - lab director or genetic counselor reports/interprets results to referring MD - pre-test counseling

9 Specialists in Genetics Medical/Clinical Geneticists ~ 1,970 certified MDs & PhDs, GME 4 yrs or PhD 2yr post-doc Genetic Counselors ~ 2,100, MS in Genetic Counseling Nurses in Genetics, various education and roles - genetic counseling, care coordination ~ 300 clinical specialists, various education and roles - genetic counseling, care coordination

10 Concern: Downward Trend in New Diplomates

11 Medical Specialty Board Certificates (ABMS Certificates, can hold more than one) Counts each certificateCounts each certificate

12 Medical Geneticist Survey Medical Geneticist Survey Written survey of all ABMG diplomatesWritten survey of all ABMG diplomates –Conducted Jan 2003, excluded the 2002 diplomates –Mailed to 1,594 diplomates with US addresses, 56% RR, weighted values presented Estimated active board certified geneticistsEstimated active board certified geneticists –1,377 diplomates active in genetics, 926 MD (or MD/PhD) and 451 PhD Demographics and EducationDemographics and Education –50% women, mean age 52 years, –Few from minority groups (9% Asian, 4% - Black, Hispanic, Other) –highly educated (21% of MDs also had PhD) –MDs GME: 72% Pediatrics 11% Internal Med 11% Ob/Gyn 6% Path

13 Geneticists Primary Work Setting AllMDsPhDs Academic Medical Center 626655 Hospital 9910 Commercial Lab 9222 Med Practice/HMO 10133 Other settings 10

14 Geneticists – % Time Effort All n=1,377 MDs n=926 PhDs n= 451 Patient Care 31444 Clinical Lab 22950 Research 21 22 Education 998 Administration 10 11 Other 774 Overall 87% of MDs and 16% of PhDs report at least some patient care time (not nec face-to-face care)

15 Professional Work Patterns

16 Patient Care Geneticists (face-to-face pt care) All Pt Care Geneticists n=676 Pediatrics trained n=470 Other medical Int Med, Ob/Gyn n=155 Reproductive patients 11%8%68% Infants, children, adolescents 75%81%5% Adults 13%10%27% Wait time for new pt < 1 mo 52%45%62% New patient visits per year 380350510 Visit time: new patient 85 min88 min64 min Follow-up visits per year 290270390 Visit time: follow-up patient 43 min45 min33 min

17 Medical Geneticists Small medical specialty, with few new entrantsSmall medical specialty, with few new entrants Most practice in AHCs, hospitals, practices/labsMost practice in AHCs, hospitals, practices/labs Geneticists may practice as generalists or limit practice, 85% practice with genetic counselorsGeneticists may practice as generalists or limit practice, 85% practice with genetic counselors Limited professional time in patient care with almost 50% time in research, education, administrationLimited professional time in patient care with almost 50% time in research, education, administration Modest numbers of new patient visits per year, but time intensive visits for complex cognitive services. Few follow-up/return visits.Modest numbers of new patient visits per year, but time intensive visits for complex cognitive services. Few follow-up/return visits. Majority are pediatrics trained – will this change in future ?Majority are pediatrics trained – will this change in future ? Will clinical genetics remain a specialty or become a subspecialty within larger specialties (e.g. such as obstetricians with MFM training)Will clinical genetics remain a specialty or become a subspecialty within larger specialties (e.g. such as obstetricians with MFM training)

18 Critical Concerns Human genome project completed sequencing in 2003Human genome project completed sequencing in 2003 Explosion of basic science and technology researchExplosion of basic science and technology research Highly complex science, evolvingHighly complex science, evolving Will change paradigms of health, disease, and health care planningWill change paradigms of health, disease, and health care planning Chasm between potential impacts vs current level of health services and policy researchChasm between potential impacts vs current level of health services and policy research Timeframe unclearTimeframe unclear

19 Broader Planning/Policy Questions Re: Assure Adequate Genetics Workforce Training program supportTraining program support Profession of genetic counselorsProfession of genetic counselors Roles for advanced practice nurses in geneticsRoles for advanced practice nurses in genetics Clinical applications: medical specialists, pharmacists, therapists, othersClinical applications: medical specialists, pharmacists, therapists, others Further research on models of care - allows research across professionsFurther research on models of care - allows research across professions Strategic planning by medical geneticistsStrategic planning by medical geneticists

20 Research Team Judith Cooksey, PIJudith Cooksey, PI Miriam Blitzer, CoIMiriam Blitzer, CoI Ed Salsberg, CoIEd Salsberg, CoI Laura-Mae Baldwin, CoILaura-Mae Baldwin, CoI Judith BenkendorfJudith Benkendorf Dale LeaDale Lea Julie MansourJulie Mansour Helen TraversHelen Travers Gaetano ForteGaetano Forte Pamela SaundersPamela Saunders Cynthia GordonCynthia Gordon Dan BeckettDan Beckett Patsy FlanaganPatsy Flanagan Kimberly MooreKimberly Moore University of Maryland Baltimore and HRSA Funded Workforce Research Centers at State University of New York, AlbanyState University of New York, Albany University of Illinois at ChicagoUniversity of Illinois at Chicago University of WashingtonUniversity of Washington University of Texas Health Science Center at San AntonioUniversity of Texas Health Science Center at San Antonio HRSA Project OfficerHRSA Project Officer –Sarah Richards

21 Research Project Funders (9/01 – 9/04) Health Resources and Services Administration (HRSA) – –Bureau of Health Professions (BHPr), Office of Workforce Planning and Analysis – –Maternal Child Health Bureau (MCHB), Genetic Services Branch NIH National Human Genome Research Institute (NHGRI) - Ethical, Legal, and Social Implications (ELSI) Program

22 Thank you!

23 Findings Across Models of Care Clinical geneticistsClinical geneticists –Work in teams with genetic counselors, medical trainees, multi-specialty clinics –Family history, lab test ordering, and interpretation skills –Practice as generalist geneticists with specialization in subset of disorders, keep up with new clinical entities/tests –Outpatient with varying in-patient consults – including NNIUC, PICU Genetic test availability influences demand/providersGenetic test availability influences demand/providers –Availability & demand for tests demand for services –medical specialists engagement

24 Findings Across Models of Care (2) Diffusion of medical innovation/technologyDiffusion of medical innovation/technology Academic health centers specialists (researchers & complex referrals) Medical specialists Primary care physicians Market factors are important driversMarket factors are important drivers –Organizational history, leadership, support –Competition and corporatization –Reimbursement design Limited therapies- now diagnostic, prognostic and managementLimited therapies- now diagnostic, prognostic and management –Future change may be dramatic with targeted effective therapeutics


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