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2021 Midwest Genetics Network Annual Meeting 2021 Midwest Genetics Network Annual Meeting

2021 Midwest Genetics Network Annual Meeting - PowerPoint Presentation

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2021 Midwest Genetics Network Annual Meeting - PPT Presentation

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

care genetic family genetics genetic care genetics family project services patient mgn health primary developmental conditions outcomes education screen

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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

Slide2

Welcome and MGN Announcements:

Mathew J. EdickDirector, MGNWelcome StakeholdersMeet the MGN Advisory Board and Staff

What’s New at MGN

Newsletter

Project Echo

Slide3

Susan 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!

Slide4

2021 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.

Slide5

2021 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.

Slide6

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.

Slide7

Project Inclusive Genetics - An initiative to improve cultural competency in medicine

 Shoumita Dasgupta, PhD Boston University School of Medicine 

Slide8

Up Next:

National UpdatesSoohyun Kim, Project Officer, Health Resources Services Administration (HRSA)

Slide9

Enjoy a BREAK…

See you at back at 3:00 pm EST

Slide10

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 

Slide11

National Coordinating Center for the Regional Genetics Networks Updates

Megan Lyon

Slide12

MGN Showcase

Kristen Reese – Patient Family Council Sara Zoran – MOC4 Project Outcomes and Report HighlightsMat Edick – New Supplemental Grant Funding (EGGMIO) Announcement

Slide13

Patient 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

Slide14

Patient 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!

Slide15

Patient 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

Slide16

MGN 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

Slide17

Slide18

Specialty 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

Slide19

Maintenance 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)

Slide21

Outcomes Participant Information

MOC4: 37 Registered

MOC2: 13 Registered

CME: 37 Registered

Slide22

OutcomesAudit Results

# Screened

# Concerning Screen

/ # Screened

# Referred for Early Intervention

/ # Concerning Screen

Slide23

OutcomesAudit Results

# Referred to Genetics / # Concerning Screen

# Referred Other

/ # Concerning Screen

Slide24

OutcomesAwareness & 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

Slide25

MGN Showcase

Mat Edick– New Supplemental Grant Funding (EGGMIO)Evaluating Genetic and Genomic Medicine Implementation and Outcomes in the Midwest Genetics Network (EGGMIO-MGN) project

Slide26

Since 2018, 200+ pediatricians from 21 states and US territories have participated in MGN’s CEQI projects

Slide27

Goal 1

To improve primary care providers’ ability to care for patients with genetic conditions.

20%

100%

20%

Slide28

Goal 2To develop a scalable model for replication across the Regional Genetics Network system

Slide29

MGN’s existing Stakeholder Education infrastructure and experience will be enhanced through collaboration with other regional and national network partners

Slide30

Outcomes

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

Slide31

Kristen Reese – Patient Family Council

Sara Zoran – MOC4 Project Outcomes and Report Highlights

Mat Edick – New Supplemental Grant Funding (EGGMIO) Announcement

Slide32

Featured 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

Slide33

Up Next:

Social Hour for Patient/Family RepresentativesKristen Reese

*Separate zoom link was

sent*