Assessing Genetic Services and
the Health Workforce (2001(2001-2004)
Genetics Workforce Concern:
Limited Supply of Medical Geneticists
Purpose of Overall Research Project:
• To describe current models for organizing and
delivering clinical genetic services
Judith A. Cooksey, MD, MPH
• To describe roles of health professionals in services
Miriam Blitzer,
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
• To identify the factors driving change and demand for
services
• To establish a foundation for further health services
research in genetic/genomics clinical services
Overview
Research Design
• Modeled after Center for Health
Systems Change Community Tracking
Study (www.hschange.org
(www.hschange.org))
• National survey research
• InIn-depth case studies of four
metropolitan markets
• Assessing baseline and change
Diagnosis, Risk Assessment,
Counseling, Management
• Genetics Services and Models of Care
• Clinical Genetics Specialty Workforce
• Findings from Survey of MD Geneticists
• Workforce Planning and Policy Issues
Clinical Genetic Testing Services
•
•
•
•
Reproductive
Counseling
Test processing
Results reporting
Interpretation of results
Other services - counseling
Rare genetic conditions
Single gene
conditions
Adult onset conditions
Familial cancer risk assessment
SACGHS October 23 2003
1
Models of Care for Clinical Genetics
1. Traditional genetics clinic
Models of Care for Clinical Genetics
4. Public Health/State Sponsored
Screening and Services
- newborn screening, genetic outreach
clinics
- geneticists and genetic counselors
2. Combined clinics
- medical specialist, geneticist, genetic
counselors, others
3. Other medical specialist provides genetic
services to patient (not family)
5. Laboratory Sponsored Services
- lab director or genetic counselor
reports/interprets results to referring MD
- pre
- test counseling
- Obstetrician (MFM), oncologist, etc
- often genetic counselors
Concern: Downward Trend in New
Diplomates
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
1990
1993
1996
1999
2002
MD Clinical Genetics
134
136
123
89
69
Laboratory Genetics
76
195*
128
85
77
210
331
251
174
146
Total ABMG Diplomates
Nurses in Genetics
* new laboratory specialty added
~ 300 clinical specialists,, various education and
roles- genetic counseling, care coordination
Medical Specialty Board Certificates
Medical Geneticist Survey
(ABMS Certificates, can hold more than one)
All Specialties
Internal Medicine
Pediatrics
Obstet/Gynecology
Radiology
Pathology
Allergy/Immunology
Medical Genetics*
• Counts each certificate
SACGHS October 23 2003
< 1993
1993-2002
517,000
238,400
116,200
50,200
32,100
32,000
21,900
3,700
1,304
69,200
27,100
11,700
12,400
5,400
1,185
1,016
• 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
Ob/Gyn 6% Path
2
Geneticists’ Primary Work Setting
Academic
Medical Center
Hospital
Commercial Lab
Med Practice/HMO
Other settings
All
62
MDs
66
PhDs
55
9
9
10
10
9
2
13
10
10
22
3
10
Geneticists – % Time Effort
All
MDs
PhDs
n=1,377
n=926
n= 451
31
22
21
9
10
7
44
9
21
9
10
7
4
50
22
8
11
4
Patient Care
Clinical Lab
Research
Education
Administration
Other
Overall 87% of MDs and 16% of PhDs report at least some
patient care time (not nec faceface-toto-face care)
Patient Care Geneticists
Professional Work Patterns
All
Hours worked per week
MDs
(face(face-toto-face pt care)
PhDs
52
54
50
Reproductive patients
< 40 hrs/wk
8%
8%
7%
Infants, children, adolescents
> 60 hrs/wk
35%
43%
21%
Adults
Wait time for new pt < 1 mo
Income (median)
$123,000 $135,000 $101,000
New patient visits per year
Visit time: new patient
Follow-up visits per year
Visit time: follow-up patient
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
practice
with genetic counselors
• Limited professional time in patient care with almost 50% time in
in
research, education, administration
• Modest numbers of new patient visits per year, but time intensive
intensive visits
for complex cognitive services. Few followfollow-up/return visits.
• Majority are pediatrics trained – will this change in future ?
• Will clinical genetics remain a specialty or become a subspecialty
subspecialty within
larger specialties (e.g. such as obstetricians with MFM training)
training)
SACGHS October 23 2003
All Pt Care
Geneticists
n=676
Pediatrics
trained
n=470
Int Med, Ob/Gyn
11%
75%
8%
81%
68%
5%
10%
45%
350
88 min
27%
62%
510
64 min
270
45 min
390
33 min
13%
52%
380
85 min
290
43 min
Other medical
n=155
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
3
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
Research Team
•
•
•
•
•
•
•
•
•
•
•
•
•
•
Judith Cooksey, PI
Miriam Blitzer,
Blitzer, CoI
Ed Salsberg,
Salsberg, CoI
LauraLaura-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
• Strategic planning by medical geneticists
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
Thank you!
NIH National Human Genome Research
Institute (NHGRI)
- Ethical, Legal, and Social Implications
(ELSI) Program
Findings Across Models of Care
• Clinical geneticists
– Work in teams with genetic counselors, medical trainees,
multimulti-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 inin-patient consults – including
NNIUC, PICU
• Genetic test availability influences demand/providers
– Availability & demand for tests Æ demand for services
– medical specialists engagement
SACGHS October 23 2003
Findings Across Models of Care (2)
• Diffusion of medical innovation/technology
Academic health centers specialists (researchers & complex
referrals) Æ Medical specialists Æ 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
4