Genetics Workforce Concern: Limited Supply of Medical Geneticists

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 roles of health professionals in 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

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

4. Overview • Genetics Services and Models of Care • Clinical Genetics Specialty Workforce • Findings from Survey of MD Geneticists • Workforce Planning and Policy Issues

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

6. Clinical Genetic Testing Services • Test processing • Results reporting • Interpretation of results • Other services - counseling

7. Models of Care for Clinical Genetics • Traditional genetics clinic - geneticists and genetic counselors 2. Combined clinics - medical specialist, geneticist, genetic counselors, others • 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 ~ 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 certificate

12. Medical Geneticist Survey • Written 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 geneticists • 1,377 diplomates active in genetics, 926 MD (or MD/PhD) and 451 PhD • Demographics 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

14. Geneticists – % Time Effort 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)

17. Medical Geneticists • Small medical specialty, with few new entrants • Most practice in AHCs, hospitals, practices/labs • Geneticists 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, administration • 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 ? • 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 2003 • Explosion of basic science and technology research • Highly complex science, evolving • Will change paradigms of health, disease, and health care planning • Chasm between potential impacts vs current level of health services and policy research • Timeframe unclear

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

20. Judith Cooksey, PI Miriam Blitzer, CoI Ed Salsberg, CoI Laura-Mae Baldwin, CoI Judith Benkendorf Dale Lea Julie Mansour Helen Travers Gaetano Forte Pamela Saunders Cynthia Gordon Dan Beckett Patsy Flanagan Kimberly Moore University of Maryland Baltimore and HRSA Funded Workforce Research Centers at State University of New York, Albany University of Illinois at Chicago University of Washington University of Texas Health Science Center at San Antonio HRSA Project Officer Sarah Richards Research Team

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 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/providers • Availability & demand for tests  demand for services • medical specialists engagement

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