Increasing Access to Care Through the Lens of Diversity and Inclusion September 29 2021 100 500 pm EST This project is supported by the Health Resources and Services Administration HRSA of the US Department of Health and Human Services HHS under grant number UH7MC30775 Midwest Genet ID: 916795
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Slide1
2021 Midwest Genetics Network Annual Meeting
Increasing Access to Care Through the Lens of Diversity and InclusionSeptember 29, 2021 ~ 1:00 -5:00 pm EST
This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number UH7MC30775, Midwest Genetics Network for $764,748.00 (0% financed with nongovernmental sources). Information, content and conclusions are those of the presenters and participants and should not be construed as the official position or policy of, nor should any endorsements by inferred by HRSA, HHS, or the U.S. Government
Slide2Welcome and MGN Announcements:
Mathew J. EdickDirector, MGNWelcome StakeholdersMeet the MGN Advisory Board and Staff
What’s New at MGN
Newsletter
Project Echo
Slide3Susan A. Berry
Co-Director, MGNWelcome and MGN Announcements: Trivia GameShow off your knowledge about Genetics!First one to answer question correctly in the Chat wins! Win a $5 Amazon Gift Card!
Slide42021 Innovation Awards
Community Health Clinic, Inc., IndianaIncrease access for Plain community members to quality genetics services through genetics outreach clinics and genetics education events in Michigan and Indiana. DDC Clinic, Center for Children with Special Needs, OhioTelemedicine in the ‘Low-Tech’ Plain Community – expand telemedicine uptake in Plain communities by developing and implementing a model that addresses lack of technology, internet and electricity barriers by bringing technology to, and incorporating it into home visits and outreach clinics. The model will include training for onsite and remote providers.Center for Special Children, La Farge Medical Clinic, WisconsinPlain Community Low Protein Cookbook – Develop and distribute a free Plain community cookbook with background information on metabolic disorders, recipes, family stories and practical guidance; and without commercial influence.
Slide52021 Innovation Awards
Family Voices Indiana Host a virtual question-and-answer session with a genetics provider from which up to 3 fact sheets will be created to help families of children with genetic conditions understand the system of services available to them in Indiana; conduct outreach to providers, including genetics providers, across the state to promote the fact sheets so that both professionals and families benefit from their content.WisconSibs, Inc.Create and deliver age-appropriate disability education toolkits called Sibsacks
to up to 500 families with children between the ages of 3-11, who have, or ate at risk for genetic conditions. The
Sibsack
project addresses the need for education, informed conversation, and supportive connections among siblings, people with genetic conditions, and their families; vital for the health and well-being of siblings who are emerging as the next generation of caregivers for family members with disabilities, including genetic conditions.
2021 Innovation Awards
Michigan Department of Health and Human ServicesTo ensure MI laboratory services are accessible from an equity perspective, regardless of a patient’s condition, location, or insurance status an environmental scan of MI laboratory services will be conducted to promote a better understanding of the exiting infrastructure for these services including laboratory capabilities, capacity and funding. This assessment will provide details about in-state laboratory services in order to determine if enhancements or improvements to access are needed to serve and monitor metabolic conditions across the lifespan.
Slide7Project Inclusive Genetics - An initiative to improve cultural competency in medicine
Shoumita Dasgupta, PhD Boston University School of Medicine
Slide8Up Next:
National UpdatesSoohyun Kim, Project Officer, Health Resources Services Administration (HRSA)
Slide9Enjoy a BREAK…
See you at back at 3:00 pm EST
Beyond the Binary: Gender Diversity in Genetic Counseling
-Kim Zayhowski
(she/her), MS, CGC, Boston Medical Center and Boston University’s Genetic Counseling Program
-Tala
Berro
(she/they), MS, CGC, Brigham and Women’s Hospital
Slide11National Coordinating Center for the Regional Genetics Networks Updates
Megan Lyon
Slide12MGN Showcase
Kristen Reese – Patient Family Council Sara Zoran – MOC4 Project Outcomes and Report HighlightsMat Edick – New Supplemental Grant Funding (EGGMIO) Announcement
Slide13Patient and Family Council
Started with a goal to recruit and rebuild patient and family representative voice and participation in MGNReached out to Family Voices/Family to Family networks with recruitment letter and phone calls
Reached out to past members who hadn't been active
Held an orientation session for new members in Aug 2020
Slide14Patient and Family Council
Grown to currently have 32 members (27 w/ 5 as "consult")Have met 8 times since last year's Annual Meeting (every other month initially, then monthly since March 2021)Averaging 17 attendees per meeting!
Slide15Patient and Family Council
Current ProjectsCreating a mobile app out of the Journey through DiagnosisExploring creation of an Echo Provider Education session on family perspective on perceived reluctance to pursue/accept genetic testing and diagnosis
Creating family videos to add to the mobile app and website
Compiling "patient and family friendly" resources for MGN website
Slide16MGN Showcase
- MOC4 Project Outcomes and Report HighlightsImproving Care for Developmental Disabilities & Dysmorphic FeaturesA Multi-state Virtual Learning Project Targeted at Primary Care Providers
Sara Zoran, MS, CGC
Genetic systems integration (GSI) Hub Coordinator
Clinical Genetic Counselor –
Waisman
Center
Slide17Slide18Specialty Care
Primary Care
Lemke et al.
PrimaryLemke
et al., Primary Care Physician Experiences with Integrated Population-Scale Genetic Testing: A Mixed-Methods Assessment.
Journal of Personalized Medicine
. 2020; 10(4):165.
Carroll et al,. Informing Integration of Genomic Medicine Into Primary Care: An Assessment of Current Practice, Attitudes, and Desired Resources, Frontiers in Genetics, Vol10,2019, p1189
Further Evaluation
Improving Care for Developmental Disabilities & Dysmorphic Features
Continuing Education for PCPs
Lemke et al. PrimaryLemke et al., Primary Care Physician Experiences with Integrated Population-Scale Genetic Testing: A Mixed-Methods Assessment.
Journal of Personalized Medicine
. 2020; 10(4):165.
Carroll et al,. Informing Integration of Genomic Medicine Into Primary Care: An Assessment of Current Practice, Attitudes, and Desired Resources, Frontiers in Genetics, Vol10,2019, p1189
22.6%
(10-35
mo
)
Variable knowledge and confidence
Difficulty identifying genetic resources
Awareness of Genetic Services
REFER
Developmental Screening of
All
Children
(AAP Guidance)
Availability of Genetic Testing
Chronic shortage of genetic providers
Slide19Maintenance of Certification (MOC)A commitment to quality and improving care
Completing MOC requirements fulfills multiple recertification requirements for physiciansPart 1: Maintaining valid, unrestricted medical licensurePart 2: Completing self-assessment and continued learning activitiesPart 3: Passing either the proctored examination or MOCA-PedsPart 4: Improving Professional Practice & Quality Improvement activitiesDesigned to help assess and improve the quality of patient care and processes that will lead to improved health
Improving Care for Developmental Disabilities & Dysmorphic Features
Approved by American Board of Pediatrics
Outcome report submitted to ABP
Project Aim:
Improve
# of developmental screens
at the 18-35
mo
WC and
referrals
for those with concerning screen results
Slide20# Children (18-35
mo) Seen # Screened# w/ Concerning Screen
# Referred - Genetics
# Referred - Other diagnostic work up
Developmental Screening at the Well-Child Visit
The Pediatric Genetics Evaluation: What to Expect
Dysmorphology
101: Using Your Observation Skills
Introduction to Commonly Recommended Genetic Tests
“Improving Care for Developmental Disabilities and Dysmorphic Features”
MOC4
≥
3 QI Cycles,
≥ 2 Intervention Strategies (
4 months to complete)
Slide21Outcomes Participant Information
MOC4: 37 Registered
MOC2: 13 Registered
CME: 37 Registered
Slide22OutcomesAudit Results
# Screened
# Concerning Screen
/ # Screened
# Referred for Early Intervention
/ # Concerning Screen
Slide23OutcomesAudit Results
# Referred to Genetics / # Concerning Screen
# Referred Other
/ # Concerning Screen
Slide24OutcomesAwareness & Knowledge
Pre-TestPost-TestHow important is it to conduct a developmental screen?95.798.7How familiar are you with screening tools?77.6
88.9
How well do you understand the process of genetic evaluation?
50.7
82.4
How confident
are you in identifying appropriate resources?
54.6
77.9
Rate the importance of recognizing & communicating dysmorphic features in the diagnosis of genetic syndromes
81.3
93.2
How confident are you in using measurements
to assess facial features?
28.5
62.3
Can you readily differentiate between commonly recommended genetic tests?
45.1
72.7
Do you believer there is value in pre-testing counseling and informed consent?
79.3
90.5
Pres
1
2
4
3
Scale: 1-100
Slide25MGN Showcase
Mat Edick– New Supplemental Grant Funding (EGGMIO)Evaluating Genetic and Genomic Medicine Implementation and Outcomes in the Midwest Genetics Network (EGGMIO-MGN) project
Slide26Since 2018, 200+ pediatricians from 21 states and US territories have participated in MGN’s CEQI projects
Slide27Goal 1
To improve primary care providers’ ability to care for patients with genetic conditions.
20%
100%
20%
Slide28Goal 2To develop a scalable model for replication across the Regional Genetics Network system
Slide29MGN’s existing Stakeholder Education infrastructure and experience will be enhanced through collaboration with other regional and national network partners
Slide30Outcomes
Short term
Increased capacity across the RGN system to leverage CEQI requirements to education primary care providers on topics in genetics
Long Term
PCPs will be better equipped to care for their patients who have genetic conditions
Increased access to genetic services and improved quality of care leading to better health outcomes for individuals with genetic conditions
Slide31Kristen Reese – Patient Family Council
Sara Zoran – MOC4 Project Outcomes and Report Highlights
Mat Edick – New Supplemental Grant Funding (EGGMIO) Announcement
Slide32Featured Participants
Dr. Renee CanadyDr. Sue BerryDr. Shoumita Dasgupta
Rare Melanin
National Coordinating Center for the Regional Genetics Networks
Minority Genetic Professionals Network
National Society for Genetic Counselors
Slide33Up Next:
Social Hour for Patient/Family RepresentativesKristen Reese
*Separate zoom link was
sent*