Transcript Document

Champions and Family Representatives:
Critical Connection to Make a Difference
Across the Lifespan
Welcome & Introductions
Your vision: How will the world be different tomorrow
because of our work together?
Champions:
Making a Difference Across the Lifespan
Family Representative Role:
family contact for each thematic area
Who are Champions?
• Champion strategy is based on communities of
practice literature, commonly used in business and
education settings (Wenger)
Why are we doing this?
“We need to
know what
partners are
doing so we can
plan ahead for
opportunities.”
“I could help
more if I better
understood the
plan”
“I wish I had a
better sense of
how partners are
supporting the
Center”
“I wish I had the
information I
need to ‘make
the case’ for the
Center”
“I don’t want to
hear things
through the
grapevine. I
want to be
strategic.”
“How does the
work that I am
doing with
partners fit in
with the
Friends?”
“I want to be a
part of planning
the solution…not
just asked to
carry it out.”
“I want to be
true partner –
not just a
conduit.”
Champions Benefits: What’s in it for you?
• Serve as an expert in a key thematic focus
area
• Get access to NCBDDD leadership
• Connections through serving as a member
liaison for a group of key partners in a key
thematic focus area
• Benefits of contributing to build, share, and
apply knowledge assets
How NCBDDD Will Use Champions:
• Instant think-tank
• Gain value of partner input and experience in
areas of expertise
• Extend the reach of programs, initiatives, and
public health practice
• Test out an approach and receive feedback
before a launch
• Know it
• Build knowledge of NCBDDD projects
within the thematic area
• Frame it
• Advise on specific messaging for the
thematic area
• Connect it
• Act as a member liaison for a group of
top 10 key partners whose mission and
work relate to the topic
• Share it
• Assist in promoting the work of the
Center and Friends through various
channels
Champions….dedicated already!
Diane Wilkinson
Gov’t Relations
Kerri Wade
Program
March of Dimes
Association of
Women's Health,
Obstetric and
Neonatal Nurses
Adriane Griffen
Program
Patrick Johnson
Gov’t Relations
Association of
University Centers
on Disability
American
Academy of
Pediatrics
Katie Verb
Gov’t Relations
Randy Fenninger
Gov’t Relations
Hemophilia
Federation of
America
National Blood
Clot Alliance
Roberta Carlin
Program
American
Association on
Health and Disability
Sara Struwe
Gov’t Relations/
Program
Spina Bifida
Association
Developing the Score
• Unique Public Health Role
– Your seat at the public health table
• Public health jurisdiction
National Center on Birth Defects and
Developmental Disabilities
From beginning to end, a better life for all.
Coleen A. Boyle, PhD, MSHyg
Director
Centers for Disease Control and Prevention
National Center on Birth Defects and Developmental Disabilities
What We Will Discuss

Mission of NCBDDD

Brief Overview of Public Health

NCBDDD’s Work Objectives
 Thematic Focus Areas
 Strategic Health Initiatives
NCBDDD
From beginning to end, a better life for all


Established by the Children’s Health Act of 2000
Our mission is to promote the health of babies, children
and adults and to enhance the potential for full,
productive living. Everyday, we work toward that
mission:
Our efforts impact millions
of our nation’s most
vulnerable
1 in 33 babies is born with a birth defect
1 in 5 Americans has a disability
Approximately 13% of children younger than 18 are
affected by a developmental disability
People with sickle cell disease have a life expectancy
30 years shorter than average
NCBDDD’s Objectives
• 4 Thematic Focus Areas
• 3 Strategic Health Initiatives
THEMATIC FOCUS AREAS
NCBDDD’s Strategic Health Initiatives

NCBDDD has launched three Strategic Health Initiatives
(SHIs) in order to accelerate our Center’s impact around
three key public health topics:
 Treating for Two - to prevent birth defects through safer use of
medication during pregnancy
 Prevention of Health Care Associated Venous Thromboembolism - to
prevent a serious blood clot
 Aligning practice with best science for the treatment of AttentionDeficit/Hyperactivity Disorder (ADHD) in Young Children - to reduce the
number of preschoolers who get medication before behavioral therapy
Division of Birth Defects &
Developmental Disabilities
Primary programs:
• Birth Defects Research and
Prevention; State-based
Surveillance
• Autism and Developmental
Disabilities Research and
Epidemiology; Monitoring
Network
• Fetal Alcohol Spectrum
Disorders Prevention
Strategic Health Initiative:
Treating for Two
Treating for Two:
Safer Medication Use in Pregnancy

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The Problem: we know that many doctors and women face
uncertainty about using medication during pregnancy.
But, we know safer medication use in pregnancy will lead to
healthier pregnancies and healthier babies through better
research, reliable guidance, and informed decisions.
Division of Blood Disorders
Primary programs:
• Public Health Surveillance
Project on Bleeding Disorders
• Blood Safety Surveillance
among People with Blood
Disorders Project
• Hospital-Associated Venous
Thromboembolism Surveillance
Pilots
Strategic Health Initiative:
Venous Thromboembolism
Healthcare-Associated Venous Thromboembolism
(VTE)


The Problem: Patients who are currently or recently
hospitalized, recovering from surgery, being treated for cancer,
or on bed rest, have an increased risk of developing serious
and potentially deadly blood clots in the form of venous
thromboembolism (VTE).
But, we know that 70% of health care associated VTEs are
preventable and that evidence based interventions will reduce
the number of post-surgical patients who die from blood clots.
Division of Human Development and Disability
Attention-Deficit/Hyperactivity Disorder (ADHD)


The Problem: Research suggests that current medical
guidelines are not being followed for treating very young
children diagnosed with ADHD
But, we know that behavioral therapy treatment for ADHD is a
first-line treatment that can safely and effectively treat ADHD
symptoms in young children.
SHIs: Drivers of Change

The SHIs will impact public health by:
 Promoting evidence-based health care
strategies to address these issues;
 Integrating patient and healthcare
provider communication strategies that
promote informed decision-making by
our target populations;
 Using real-time, accurate data tracking to
keep our understanding of the problem
current and to improve health care
delivery systems;
 Evaluating the effects of these efforts
over time and spreading the word within
systems about what’s working.
Surveillance
What’s the
problem?
Risk Factor
Identification
Implementation
How is it done?
What’s the cause?
Intervention
Evaluation
What works?
Action in Progress

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We are building strong coalitions of support around our SHIs
with medical and professional organizations, health care
systems, federal agencies, and public and private sector.
Together we are taking action-- and our work is only just
beginning.
There is much work to be done and we can’t stop here.
With your help we can improve the health of those we serve.
Developing the Score
• Develop a coordinated Communication Plan
– Common messaging
– Key Audiences
• Policy Makers
• Other NGOs
• Families
– Targeted activities
– Leveraging opportunities
Refining the Chords
Oct 29th
Champion
Orientation
→ Educated,
empowered
champions
Nov 12th
Friends End of Year
Meeting
January
Partner Briefing and
Kick-off
→ Common
messaging
→ Targeted
communication
plan
→ Cadre of
partners around
each theme
→ SHI Update
→ Plans for 2015
• Know it
• Internalize this strategy and
lean on it
• Frame it
• Help us by being a part of
the solution
• Connect it
• Think critically about how
best to engage your fellow
members of Friends
• Share it
• Conference calls with
Friends and Division leaders
Champion Role
Critical Connection
• serve as a sounding board for the
Champions as they are developing
strategies during the year
• Commitment would likely include:
• participating in 3-4 short check
in calls over the course of the
year
• Reviewing any materials that may
be developed
• Think critically about how best to
engage your fellow members of
Friends
Sharing Updates
• Conference calls with Friends
Champions and leaders
• Friends blog posts
• Friends newsletter updates
Family
Representative
Role:
family contact for
each thematic
area
Friends Communication Strategy
Communications Strategy 2015
Goals:
1. Increase awareness of NCBDDD at CDC and public health agencies
2. Increase awareness of how your organization plays a role in public health
3. Increase communication with others beyond members of the Friends.
Tactics:
Use the thematic areas to frame data and stories to achieve the goals:
1. Saving babies through birth defects prevention and research
2. Helping children live to the fullest by understanding developmental
disabilities like autism
3. Protecting people and preventing complications of blood disorders
4. Improving the health of people with disabilities
Audiences:
1. Policy makers
2. Families
3. NGOs
Friends 2015 Strategy
Audience:
Policymakers
 Families
 NGOs
Friends Leadership
Partner:
Advocacy Coalition
Family Voices
EC/Champions
Long Term Goal
Policymakers
(main audience)
EC/Champions
Increase awareness and
Facilitate 10-15 Hill and
value of NCBDDD at CDC
state visits by May 2015
and public health agencies
Advocacy Coalition
Short Term Win
SMART
Increase recognition of
the importance of
NCBDDD programs among
Congressional and
Executive Branch
leadership and opinion
leaders by finding
Congressional champions
Families and
Family Voices
people with a
EC/Champions
disability
(Secondary Target
Audience)
Increase communication
with families and people
with a disability or blood
disorder and others
beyond members of
Friends
Supporting Friends
Activities/Timelines
Integrate Advocacy Coalition
talking points into existing
member policy efforts and “asks”
by March 2015
Develop visual collaterals by
March 2015
Host 2-3 twitter chats
and Google Hangouts by
March/April 2015 and
invite other partners
Create shared calendar of events
by February 2015
Develop 5-10 personal stories
from families and people with a
disability or blood disorder by
March 2015
- eg. Create a blog where families
and individuals with disabilities
can submit/post their stories
Champions: Making a Difference Across the Lifespan
Thank you!