Introducing the Medical Genetics Workforce and the NCC/RC ...Presentation Transcript
Introducing the Medical Genetics Workforce and the NCC/RC System to LEND Judith Benkendorf, MS, CGC American College of Medical Genetics National Coordinating Center for the Genetics and Newborn Screening Regional Collaborative Groups November 13, 2007
Why Should the Medical Genetics Community Meet LEND?
The genetics workforce is too small to ensure that all who could benefit from genetically-tailored care receive it.
All LEND professionals and trainees should view themselves as part of the solution.
The National Coordinating Center (NCC)/Regional Genetics and Newborn Screening Services Collaboratives (RC) system is a natural partner.
LEND programs are a vehicle for education and dissemination of NCC/RC programs and activities.
Moving from Acquaintances to Partners
Introducing the Medical Genetics Workforce (1)
ABMG certified clinical geneticists (MD)
1,253 total certificates (November 2007)
~1,100 active in the US (estimated) spend ~45% of their time seeing genetics patients (ACMG, 2007 data)
~1 FTE Certified MD geneticist per~560,00 people; or ~1.8 clinical geneticists per million population
Royal College of Physicians estimates 1 FTE/250,000 population.
Based on current population of roughly 301,140,000 the US needs 1200 FTE MDs.
We are only half way there!
Introducing the Medical Genetics Workforce (2)
Genetic Counselors (ABGC)
2,437 board certified (November 2007; ABGC)
1 genetic counselor for every 123,600 individuals
Assuming all are alive and practicing in the USA
Genetic counselors remain the fastest growing cohort, BUT:
6% are men
9% represent minority communities
Other team members
PhD medical geneticists (clinical laboratory directors)
Nurses in genetics
300 ISONG members
Laboratory technologists and others
Genetics Workforce Study Conclusions
The medical genetics workforce situation is critical!
Current clinical services workforce not expected to meet patient care needs in next 5-15 years.
Serious mismatch exists between expansion of knowledge and workforce size.
Young physicians not entering field; competition expected to increase with emerging national physician shortage.
Many states and parts of US have inadequate supply of MD clinical geneticists to meet demand.
Issues of how MD geneticists work also a factor.
A Solution to the Maldistribution of Genetic Services and Providers System of 7 Regional Genetics and Newborn Screening Service Collaboratives (RCs) and a National Coordinating Center (NCC)
Converging events led to program’s development:
Screening for Heritable Disorders legislation enacted
Responded to AAP NBS Task Force Report (2000)
States and local public health agencies to enhance, expand and improve NBS services for children at risk, including increased access to underserved
States to develop infrastructure to support NBS programs
HRSA-commissioned ACMG report on newborn screening (NBS) would be forthcoming (2004-2006)
Recommending expanding NBS services
Exacerbating issues around access and maldistribution of genetic services providers
These issues are best addressed by combining national, regional and local approaches
A network of regional centers was selected to:
Bring genetic and NBS services to local communities by sharing expertise and resources
Facilitate collaboration between public health (NBS), primary care, and (sub)specialist (genetics) providers
Capitalize on existing interstate NBS laboratory and surveillance program relationships
In 2004, Maternal and Child Health Bureau (MCHB) of the Health Resources and Services Administration (HRSA) funded:
7 Regional Genetic and Newborn Screening Service Collaboratives (RC)
Groups of adjoining states with similar overall birthrates and shared programmatic histories
Coordinating center in each RC
A National Coordinating Center
Housed at the American College of Medical Genetics
Unprecedented partnership between public health genetics and a professional medical organization
The 7 Genetics and NBS Regional Collaborative Groups New England Region NYMAC Region 3 Region 4 Heartland MSGRCC Western States NCC PR/USVI
There are LEND Programs in Each RC
Region 1 : 4 LENDs (MA, NH, VT)
Region 2 : 9 LENDs (DC, MD, NY, PA VA, WV)
Region 3 : 5 LENDs (AL, FL, NC, TN)
Region 4 : 4 LENDs (IN, OH, WI)
Region 5 : 6 LENDs (IA, KS, MO, NE, OK, SD)
Region 6 : 2 LENDs (NM, UT)
Region 7 : 4 LENDS (CA, HI, OR, WA)
Expectations for RCs
Newborn and child screening and follow-up
Workforce capacity; bringing genetic services to local communities
Linkages between (sub)specialty care, primary care and public health
Genetic counseling services
Communication and education to families and health practitioners
The National Coordinating Center (1)
Facilitates communication and collaborations between RCs and nationally
Responds to issues best addressed nationally
Minimize duplication of efforts
Take advantage of shared resources
Organizes trans-RC workgroups
Provides guidance and technical resources
Translates best practices and RC activities into national initiatives
The National Coordinating Center (2)
Develops management guidelines and tools for RCs, providers, policymakers and other stakeholders
NCC interfaces with ACMG
When endorsement needed for NCC/RC work products (e.g., practice guidelines, ACT sheets)
When collaboration can leverage impact of activities in either direction
When RCs can benefit from existing ACMG relationships and convening power
LENDs are natural partners
NCC Workgroups/Activities (1)
Workgroups comprised of RC representatives and national experts, including MCHB
LEND representatives can be added
Centrally coordinated by NCC
Telegenetics capacity development
Genetic and NBS service provider directory built using GIS mapping
Management guideline development for NBS and common genetic tests
Point-of-care provider education and decision support through EMR
NCC Workgroups/Activities (2)
NBS ACT(ion) Sheets and Diagnostic Algorithms
For all conditions in NBS uniform panel
Approved by ACMG Board of Directors
Distributed to NBS labs and programs
To accompany all “screen positive” lab reports
Distributed to RCs to coordinate use with local and regional plans
NBS ACT Sheets currently being written for non-S hemoglobin alleles
Beyond sickle cell disease and the thalassemias
NCC Workgroups/Activities (3)
NB Hearing Screening ACT Sheet being adapted into a brochure for parents of “screen positive” infants
Tailored to low-literate populations
Emphasis on genetic workup as part of etiologic diagnosis
Supplemental grant to develop similar primary care guidance for genetic testing
To be disseminated by genetics laboratories in the US with “positive” test results
Fragile X, CF and hemoglobinopathy testing as models
Model management guidelines for primary care providers
Transition to adult care
NCC Workgroups/Activities (4)
NBS long-term follow-up and data collection
Standardized clinical and laboratory languages
Integration with other projects including Quality of Genetic Services project (outcomes data valuable to building the business case for genetic services)
Collaborative research for rare disorders network
Translational research focus
Multiple partners (e.g., ACMG, NCC, NICHD)
National and international implications
NCC Workgroups/Activities (5)
NCC/RC system used for systems development and data collection
Data critical for development of therapeutics and evaluation of tests to be added to NBS panel
Genetics patient registry
Tracking NBS pilot studies
Organizing metabolic centers around follow-up
The Future for NCC and RCs (2007-2012)
Advanced communication technologies
Lab performance and standardization
The Future for NCC and RCs (2007-2012)
Will continue to focus on enabling providers by:
Developing tools and activities to move genetics and NBS services to local communities
Connecting public health, primary care and specialty providers (geneticists)
Yes, the Glass is Half Full!
AAP just announced that GENETICS will be one of its areas of focus in 2008
Increased visibility in journal and at annual meeting
S 1858 (NBS Bill) has $5 million/year authorized for education, including for providers
Mark-up tomorrow (11/14/07)
Yes, the Glass is Half Full!
Possible appropriation of $30 million for autism
Much of it to LENDs if enacted
ACMG education activities for providers include developing genetic disease-based vignettes ( www .understandingNF1.org) and other decision support tools that can be adapted by LENDs.
The Bottom Line: It’s Time for LEND and Medical Genetics to Move from Acquaintances to Partners (1)
The genetics workforce situation is critical, requiring coordinated, multi-faceted solutions.
Common Ground: The NCC/RC System addresses issues related to access to quality genetics and NBS services (viewing services as a continuum), and decreasing health disparities, at the level of individuals, families, communities and nationally.
NCC/RC program build bridges between genetics specialists, primary care (Medical Home) and public health
Genetic advances will impact the healthcare of people and families with neurodevelopmental disabilities.
NBS for developmental disabilities debate continues
The Bottom Line: It’s Time for LEND and Medical Genetics to Move from Acquaintances to Partners (2)
The RCs are a venue for LEND trainees to gain experience in public health genetics
The RCs provide a vehicle for dissemination of LEND materials and messages
The RCs can provide genetics and NBS resources to LENDs
Likewise, LENDs provide a network of professionals and trainees who can assist RCs in developing and piloting practice models and educational materials
The LEND community benefits from many NCC/RC initiatives and programs.
Acknowledgement and Website
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This work was funded by U22MC03957, awarded as a cooperative agreement between the Maternal and Child Health Bureau/Health Resources and Services Administration, and the American College of Medical Genetics.