Genetics Workforce Concern:Genetics Workforce Concern:Limited Supply of Medical GeneticistsLimited Supply of Medical Geneticists

Judith A. Cooksey, MD, MPHJudith A. Cooksey, MD, MPHMiriam Blitzer, Gaetano Forte, Judith Benkendorf, Ed SalsbergMiriam Blitzer, Gaetano Forte, Judith Benkendorf, Ed Salsberg

University of Maryland Baltimore, University of Albany at State University of University of Maryland Baltimore, University of Albany at State University of New York, University of Illinois at Chicago New York, University of Illinois at Chicago

AcademyHealth Annual Research Meeting AcademyHealth Annual Research Meeting

June 6, 2004 San Diego CAJune 6, 2004 San Diego CA

Assessing Genetic Services and Assessing Genetic Services and the Health Workforce (2001-2004)the Health Workforce (2001-2004)

Purpose of Overall Research Project:Purpose of Overall Research Project:

• To describe current models for organizing and delivering To describe current models for organizing and delivering clinical genetic services 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 servicesTo identify the factors driving change and demand for services

• To establish a foundation for further health services research To establish a foundation for further health services research in genetic/genomics clinical servicesin genetic/genomics clinical services

Research DesignResearch Design

• Modeled after Center for Health Modeled after Center for Health Systems Change Community Tracking Systems Change Community Tracking Study (Study (www.hschange.orgwww.hschange.org))

• National survey researchNational survey research

• In-depth case studies of four In-depth case studies of four metropolitan marketsmetropolitan markets

• Assessing baseline and change Assessing baseline and change

OverviewOverview

• Genetics Services and Models of CareGenetics Services and Models of Care

• Clinical Genetics Specialty WorkforceClinical Genetics Specialty Workforce

• Findings from Survey of MD Geneticists Findings from Survey of MD Geneticists

• Workforce Planning and Policy IssuesWorkforce Planning and Policy Issues

Diagnosis, Risk Assessment, Diagnosis, Risk Assessment, Counseling, Management Counseling, Management

                                                                 

Adult onset conditionsAdult onset conditionsFamilial cancer risk assessmentFamilial cancer risk assessment

Single gene Single gene conditionsconditions

Rare genetic conditionsRare genetic conditions

ReproductiveReproductive

CounselingCounseling

Clinical Genetic Testing ServicesClinical Genetic Testing Services

• Test processingTest processing• Results reportingResults reporting• Interpretation of resultsInterpretation of results• Other services - counselingOther services - counseling

Models of Care for Clinical Genetics Models of Care for Clinical Genetics

1.1. Traditional genetics clinicTraditional genetics clinic- geneticists and genetic counselors- geneticists and genetic counselors

2. Combined clinics 2. Combined clinics - - medical specialist, geneticist, genetic medical specialist, geneticist, genetic counselors, others counselors, others

3.3. Other medical specialist provides genetic Other medical specialist provides genetic services to patient (not family) services to patient (not family) - Obstetrician (MFM), oncologist, etc- Obstetrician (MFM), oncologist, etc- often genetic counselors- often genetic counselors

Models of Care for Clinical GeneticsModels of Care for Clinical Genetics

4.4. Public Health/State Sponsored Public Health/State Sponsored Screening and ServicesScreening and Services

- - newborn screening, genetic outreach newborn screening, genetic outreach clinicsclinics

5. Laboratory Sponsored Services5. Laboratory Sponsored Services- lab director or genetic counselor - lab director or genetic counselor reports/interprets results to referring MDreports/interprets results to referring MD

- pre-test counseling- pre-test counseling

Specialists in GeneticsSpecialists 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 - , various education and roles - genetic counseling, care coordinationgenetic counseling, care coordination

Concern: Downward Trend in New Concern: Downward Trend in New DiplomatesDiplomates

1990 1993 1996 1999 2002

MD Clinical Genetics 134 136 123 89 69

Laboratory Genetics 76 195* 128 85 77

Total ABMG Diplomates 210 331 251 174 146

* new laboratory specialty added

Medical Specialty Board Certificates Medical Specialty Board Certificates

(ABMS Certificates, can hold more than one)(ABMS Certificates, can hold more than one)< 1993 1993-2002

All Specialties 517,000 238,400

Internal Medicine 116,200 69,200Pediatrics 50,200 27,100Obstet/Gynecology 32,100 11,700Radiology 32,000 12,400Pathology 21,900 5,400Allergy/Immunology 3,700 1,185Medical Genetics* 1,304 1,016• Counts each certificateCounts each certificate

Medical Geneticist SurveyMedical Geneticist Survey

• Written survey of all ABMG diplomatesWritten survey of all ABMG diplomates – Conducted Jan 2003, excluded the 2002 diplomatesConducted Jan 2003, excluded the 2002 diplomates– Mailed to 1,594 diplomates with US addresses, 56% RR , weighted Mailed to 1,594 diplomates with US addresses, 56% RR , weighted

values presentedvalues presented

• Estimated active board certified geneticistsEstimated active board certified geneticists – 1,377 diplomates active in genetics, 926 MD (or MD/PhD) and 451 PhD1,377 diplomates active in genetics, 926 MD (or MD/PhD) and 451 PhD

• Demographics and EducationDemographics and Education– 50% women, mean age 52 years, 50% women, mean age 52 years, – Few from minority groups (9% Asian, 4% - Black, Hispanic, Other)Few from minority groups (9% Asian, 4% - Black, Hispanic, Other)– highly educated (21% of MDs also had PhD)highly educated (21% of MDs also had PhD)– MDs GME: 72% Pediatrics 11% Internal Med 11% Ob/Gyn 6% PathMDs GME: 72% Pediatrics 11% Internal Med 11% Ob/Gyn 6% Path

Geneticists’ Primary Work SettingGeneticists’ Primary Work Setting

All MDs PhDsAcademic Medical Center

62 66 55

Hospital 9 9 10Commercial Lab 9 2 22Med Practice/HMO 10 13 3Other settings 10 10 10

Geneticists – % Time EffortGeneticists – % Time Effort

All n=1,377

MDs n=926

PhDs n= 451

Patient Care 31 44 4Clinical Lab 22 9 50Research 21 21 22Education 9 9 8Administration 10 10 11Other 7 7 4

Overall 87% of MDs and 16% of PhDs report at least some Overall 87% of MDs and 16% of PhDs report at least some patient care time (not nec face-to-face care)patient care time (not nec face-to-face care)

Professional Work PatternsProfessional Work Patterns

All MDs PhDs

Hours worked per week 52 54 50

< 40 hrs/wk 8% 8% 7%

> 60 hrs/wk 35% 43% 21%

Income (median) $123,000 $135,000 $101,000

Patient Care Geneticists Patient Care Geneticists (face-to-face pt care)(face-to-face pt care)

All Pt Care Geneticists

n=676

Pediatrics trained n=470

Other medicalInt 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 380 350 510Visit time: new patient 85 min 88 min 64 minFollow-up visits per year 290 270 390Visit time: follow-up patient 43 min 45 min 33 min

Medical GeneticistsMedical Geneticists

• Small medical specialty, with few new entrants Small 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 Geneticists may practice as generalists or limit practice, 85% practice with genetic counselors genetic counselors

• Limited professional time in patient care with almost 50% time in research, Limited professional time in patient care with almost 50% time in research, education, administration education, administration

• Modest numbers of new patient visits per year, but time intensive visits for Modest numbers of new patient visits per year, but time intensive visits for complex cognitive services. Few follow-up/return visits.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 Will clinical genetics remain a specialty or become a subspecialty within larger specialties (e.g. such as obstetricians with MFM training)specialties (e.g. such as obstetricians with MFM training)

Critical ConcernsCritical Concerns

• Human genome project completed sequencing Human genome project completed sequencing in 2003in 2003

• Explosion of basic science and technology Explosion of basic science and technology researchresearch

• Highly complex science, evolvingHighly complex science, evolving• Will change paradigms of health, disease, and Will change paradigms of health, disease, and

health care planninghealth care planning• Chasm between potential impacts vs current Chasm between potential impacts vs current

level of health services and policy researchlevel of health services and policy research• Timeframe unclear Timeframe unclear

Broader Planning/Policy Questions Re: Broader Planning/Policy Questions Re: Assure Adequate Genetics WorkforceAssure 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, Clinical applications: medical specialists, pharmacists, therapists, otherstherapists, others

• Further research on models of care - allows research across Further research on models of care - allows research across professionsprofessions

• Strategic planning by medical geneticistsStrategic planning by medical geneticists

Research TeamResearch 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 Saunders Pamela Saunders • Cynthia GordonCynthia Gordon• Dan BeckettDan Beckett• Patsy FlanaganPatsy Flanagan• Kimberly MooreKimberly Moore

University of Maryland BaltimoreUniversity of Maryland Baltimoreandand

HRSA Funded Workforce Research HRSA Funded Workforce Research Centers atCenters at

• State University of New York, State University of New York, AlbanyAlbany

• University of Illinois at ChicagoUniversity of Illinois at Chicago• University of WashingtonUniversity of Washington• University of Texas Health University of Texas Health

Science Center at San AntonioScience Center at San Antonio

• HRSA Project OfficerHRSA Project Officer– Sarah RichardsSarah Richards

Research Project FundersResearch Project Funders(9/01 – 9/04)(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

Thank you!Thank you!

Findings Across Models of CareFindings Across Models of Care

• Clinical geneticistsClinical geneticists– Work in teams with genetic counselors, medicalWork in teams with genetic counselors, medical trainees, trainees,

multi-specialty clinicsmulti-specialty clinics– Family history, lab test ordering, and interpretation skillsFamily history, lab test ordering, and interpretation skills– Practice as generalist geneticists with specialization in Practice as generalist geneticists with specialization in

subset of disorders, keep up with new clinical entities/testssubset of disorders, keep up with new clinical entities/tests– Outpatient with varying in-patient consults – including Outpatient with varying in-patient consults – including

NNIUC, PICU NNIUC, PICU

• Genetic test availability influences demand/providers Genetic test availability influences demand/providers – Availability & demand for tests Availability & demand for tests demand for services demand for services – medical specialists engagementmedical specialists engagement

Findings Across Models of Care (2)Findings Across Models of Care (2)

• Diffusion of medical innovation/technologyDiffusion of medical innovation/technologyAcademic health centers specialists (researchers & complex Academic health centers specialists (researchers & complex

referrals) referrals) Medical specialists Medical specialists Primary care physicians Primary care physicians

• Market factors are important driversMarket factors are important drivers– Organizational history, leadership, supportOrganizational history, leadership, support– Competition and corporatizationCompetition and corporatization– Reimbursement designReimbursement design

• Limited therapies- now diagnostic, prognostic and Limited therapies- now diagnostic, prognostic and managementmanagement– Future change may be dramatic with targeted effective Future change may be dramatic with targeted effective

therapeuticstherapeutics