lend/regional collaboratives
TRANSCRIPT
AU C D | w w w. a u c d . o r g Assoc iat ion of Univers i ty Centers on Disabi l i t ies
LEND/Regional Collaboratives
Partnerships in Practice
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Successful Partnerships Between
Regional Collaboratives and LEND Programs
LEND/Regional Collaboratives Partnerships
April 26, 2012
Barry H. Thompson, MD
Medical Director
American College of Medical Genetics
2011 RC –LEND Engagement Discussion Results2011 RC –LEND Engagement
Discussion Results
This work is funded by U22MC03957, awarded as a cooperative agreement between the Health Resources and Services Administration, Maternal and Child Health Bureau, Genetic Services Branch and the American College of Medical Genetics
HRSA Genetics
Collaboratives and
AUCD/LEND
Background
Prior Periodic Activity
ACMG has a representative to the LEND
Genetics subgroup that meets annually.
Group was reinvigorated in 2011.
NCC Collaborator article by AUCD in June/July
2007 about LEND training in genetic counseling.
Fall 2011 AUCD and ACMG staff began to talk
about how to encourage increased interaction
between the RCs and LEND Programs.
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Current RC Engagement
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RC Interest in Future and/or
Continued Partnership
AU C D Assoc iat ion of Univers i ty Centers on Disabi l i t ies
LEND 2011 Needs Assessment
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Encouraging Future
Collaborations
Unanimous (of those RC representatives on the call comfortable indicating as such) agreement that mutual benefit would be gained by having the RCs and the LENDs work together more closely.
Bi-directional collaboration.
Each side actively reach out to the other at the LEND program and RC level.
NCC provided information to LEND about RCs with contact information at the in-person LEND meeting November 15, 2011.
NCC provided RCs with a by-RC directory of LEND programs at their meeting November 17-18, 2011 and encouraged them to follow-up with their respective programs.
Highlighting Partnerships in Practice
This webinar and its goals:
To share successful models of partnership between
LEND Programs and Regional Collaboratives;
To identify ways to initiate and sustain a relationship
with your Regional Collaborative or LEND program.
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Louise Iwaishi
Louise Kido Iwaishi, MD has been Program Director of the Hawaii MCH
LEND Program since 1994. She is the Director of the Community
Pediatrics Institute, Department of Pediatrics, University of Hawaii;
Medical Director of the Family Health Services Division(Title V
Agency), Department of Health; and Chief of Pediatrics at the Shriners
Hospitals for Children-Honolulu Unit. Dr. Iwaishi provides consultation
to the State Departments of Health, Education and Human Services and
participates in numerous local, state and national organizations related to
Children with Special Health Care Needs. She attended Pomona College,
California, and the John A. Burns School of Medicine, University of
Hawaii.
Successful Models of Partnerships
Regional Collaboratives and LEND Programs
Louise Iwaishi, MD
Hawaii MCH LEND Program
April 26, 2012
Objectives
• Provide overview of partners
• Share underlying philosophy of
successful partnerships
• Describe specific trainee activities
• Identify faculty/program benefits
Partners
PacWest LEND Consortium
• Alaska
• Arizona
• California
• Colorado
• Hawai‘i(Guam)
• Nevada
• New Mexico
• Oregon
• Utah(Idaho-Montana-
N.Dakota-Wyoming)
• Washington
Western States
Genetic Services Collaborative
• Alaska
• California
• Hawaii
• Idaho
• Guam
• Oregon
• Washington
Philosophy
• Proactive network
• Strategic MCHB performance measures
• Equity not equal contributions
• Shared successes
Trainees and Faculty
Hawai'i MCH LEND
Knowledge of Self
Interdisciplinary Knowledge
Systems Knowledge
Team Knowledge
Applied Knowledge
Content Knowledge
Discipline Knowledge
Advanced Leadership Curriculum
• Project based
• High level of interface
• Community oriented
• Tied to leadership
• Conquer fears
STRATEGIES FOR SUCCESS
• Problem Based Learning
• Public Health Policy
• Telemedicine Services
Trainee Activities
• Problem based Learning active cases
(metabolic nutritionist, clinical geneticist)
• Medical Home concepts (genetic specific
portable medical record)
Mutual Benefit
Faculty
Technical Assistance-NBS advisory; selective workgroup
• Presentations-AAP Medical Home Visiting Professor
• Publications-McWalter,Kirsty,etal Community Recommendations for
Outreach Activities for Medicaid Managed Care for the Aged, Blind and
Disabled.Hawai‘i Medical Journal 2007;36-40
Mutual Benefit
Program
• Trainees- Genetic counselor, Family
• Faculty- Clinical Geneticist, Metabolic Nutritionist, NBS
Nurse and Social Worker
• MOA- towards MCH goals and performance measures
Conclusion
Collaborative Partnerships
• Proactive network
• Strategic MCHB performance measures
• Equity not equal contributions
• Shared successes
Aloha!
Visit us at: http://blog.hawaii.edu/mchlend/
Lori Dean
Lori is a certified genetic counselor, assistant professor, program
manager for the Heartland Collaborative, and interim chair of the
genetic counseling department at the University of Arkansas for
the Medical Sciences. Lori's professional interests are in education,
public health genomics, the use of complementary and alternative
medicine in the treatment of genetic conditions, and pastoral care.
Jeanine Schulze
Jeanine Schulze is a genetic counseling graduate student at the University of Arkansas for Medical Sciences. She was a LEND trainee from January to December of 2011, and in that time had the opportunity to expander her knowledge of interdisciplinary healthcare while assisting other disciplines in understanding diverse genetic concepts. She is currently completing her thesis in collaboration with the Heartland Regional Genetics and Newborn Screening Collaborative on the topic of healthcare transition. Jeanine is a Chicago native, and hopes to return there upon graduation in May 2012
Jeanine Schulze, BA
Genetic Counseling Student
University of Arkansas for Medical Sciences
Successful Partnerships:
A Student Perspective
My Experience 2010
Started at UAMS Graduate School
Met with Lori Williamson Dean
Interviewed for LEND spot
2011
Started with the LEND program
Transition literature review
Developed transition survey
Graduated LEND Program
2012
Presented results at ACMG &
UAMS
Survey Project: Transition
Knowledge, Attitudes, and
Practices
Healthcare Transition in Practice: A KAP survey of pediatric genetics providers in the Heartland Genetics and Newborn Screening Collaborative.
Opportunity to travel to Oklahoma
city, to participate in planning
discussion with the Transition Pilot
Group.
Learning to see things from a
Public Health Perspective
Clinics
ADHD clinic
Autism Metabolic clinic
Preschool Language Enrichment Program (PLEP)
Developmental Assessment clinics
Fetal Alcohol Spectrum Family Group
Down Syndrome Follow-up clinic
Genetics clinic
High-risk Newborn Follow-up Clinic
M-CHAT clinic
Ability travel and attend conferences:
Arkansas Down Syndrome Association 6th
Annual Health Conference
Participated in genetics
education for diverse
group of health
professionals
Connections
Fact sheet for FASD taskforce
Autism awareness
Interdisciplinary approach
Learning Balance
A Successful Partnership
John B. Moeschler
Dr. Moeschler is Director of Clinical Genetics and Professor of
Pediatrics at Dartmouth Medical School. He is also the Director of the
New Hampshire LEND Program. Dr. Moeschler received his MD from
the University of Nebraska and completed his Fellowship in
Developmental Pediatrics at the University of Washington. In 1984, he
was Board Certified in Medical Genetics. In 2005, Dr. Moeschler
received his M.S. in HealthCare Improvement from the Center for
Evaluative Clinical Studies at Dartmouth. He chairs the Advisory
Committee on Newborn Screening for the State of New Hampshire and
is PI on a CDC funded Birth Defects Registry.
NEGC-NH LEND Collaboration
John B. Moeschler MD, MS Professor of Pediatrics
By Webinar, AUCD, NCC April 26, 2012
This presentation
• A bit about NH LEND
• A bit about NEGC
• Collaboration plans
The New Hampshire LEND
Program
John B. Moeschler, M.D., M.S.
Director
NH LEND Program
Institute on Disability/UCED
University of New Hampshire
Center for Community Inclusion
& Disability Studies/UCED
LEND Mission
• Maternal and Child Health workforce
development program
• Global Aim:
To improve systems of care for children with NDD and
their families
• Provide high quality interdisciplinary education
• Emphasize the integration of services supported by State, local
agencies, organizations, private providers and communities.
• Promote innovative practice models
NH LEND Trainees 2011-12
Former Trainees
National Leadership Roles
• Jeanne McAllister, BSN, MS, MHA (1996) – Director, Center for Medical Home Improvement, NH.
– Recently selected for a national appointment as Innovation Advisor for the Centers for Medicare and Medicaid Services' (CMS)
• Rebecca Carman, MSW (2003) – Senior Program Specialist, AUCD MCHB Cooperative
Agreement
• Celia Rosenquist, Ph.D. (2005) – Associate Research Scientist, Institute of Education Science, US
Department of Education.
Former Trainees
Public Health & State Leadership Roles • Laurie McCray, RN (1998)
– Board President, Disability Rights Center, (NH Protection & Advocacy)
• M Butler, RN (2002)
– Executive Committee, NH Council for Children & Adolescents with Chronic Health Conditions
• K Salvati, MS (2004)
– Board Member, NH Children’s Mental Health Community of Practice
– Board Member, NH Association of School Psychologists
• Elizabeth Collins, RN, MSN (2005)
– Director, NH Title V: Special Medical Services
• Lorene Reagan, RN (2011)
– Administrator, Bureau of Developmental Services, NH DHHS
• Kirsten Murphy (2011)
– Executive Administrator, NH Council on Autism Spectrum Disorders
National LEND Network
New England Genetics
Collaborative
John B. Moeschler, M.D.,M.S
Monica McClain, PhD
Co-Directors
Mission
The mission of the New England Genetics
Collaborative (NEGC) is to promote and improve
health and social well-being of those with
inherited conditions through collaborations
among public health professionals, private
health professionals, educators, consumers and
advocates in Maine, New Hampshire, Vermont,
Massachusetts, Rhode Island and
Connecticut
Innovation and Experimentation
• Work Groups
– Medical Home and Transition
– Health care finance and access
– Genetic health care quality improvement
– Newborn screening Long-term follow-up
– Laboratory Quality Assurance
– Emergency Preparedness
– NEGC/LEND Collaborations
Collaboration
Examples, successes
• LEND fellows participation in the GEMMS survey and pilot
• Lifecourse interdisciplinary panel in LEND seminar using PKU as example
• Kay Johnson’s work with LEND and NEGC on ACA, Medicaid access
LEND/NEGC successes
• David Helm, LEND Director at CHB/ICI is member of NEGC Advisory Committee
• Monica McClain PhD of NEGC is named faculty in Genetics and Public Health
• Peter Antal PhD is Program evaluator for both LEND and NEGC.
Key factors for success
• Shared (overlapping) missions
• Shared funding source (HRSA/MCHB, different divisions or branches)
• Moeschler PI both projects
• Ease of communication (helped by proximity)
What does it take to establish and maintain successful collaboration?
• A champion, someone in leadership role invested in both programs
• A willingness to share time and resources
• Open and easy communication
• Imagination and inventiveness
What barriers?
• Busy schedules, time commitments and priorities
• Missions also differ
Next five years:
• Invite all LEND programs in NE to participate for 5 years
• Examine current status of genetics education (“pre-service education”) among NE LEND programs in genetics and genomics, especially basic public health genetics, newborn screening, genetics of autism, intellectual disability, Sickle Cell Disease, Hemophilia.
• Participate with AUCD ad hoc national LEND working group on Genetics Education energized by Jill Shuger and Denise Sofka
• Investigate collaboration with the two Genetic Counselor training programs in NE
• By end of year 2, recruit 2 GC master-level students to LEND programs
• Fund one-two “community fellows” per year for LEND training (matching program between LEND and NEGC); any LEND program can apply
Next five years:
• Continue to assess the workforce needed to care for those children with special health care needs identified by NBS programs (McGrath, Shipman) with particular attention to metabolic disorders, SCID and CCHD
• Link GEMMS meaningfully with NE LEND education and offer opportunities for LEND trainees to support GEMMS with LEND faculty participation.
• Link LEND program requirements for trainee skill development in technical assistance and continuing education to NEGC needs; e.g., person-centered planning linked with health care transition (NEGC: Cooley and Waisbren); Youth leadership development for those living with Sickle Cell Disease and other genetic conditions (Kubiceck, Odesino, Kavanagh).
Thank you
• Monica McClain PhD NEGC
– www.negenetics.org
• Betsy Humphreys Med, NH LEND
– www.mchlend.unh.edu