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 don’t want to hear things through the grapevine. I want to be strategic.”

“I want to be a part of planning the solution…not

just asked to carry it out.”

“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”

“How does the work that I am

doing with partners fit in

with the Friends?”

“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 WilkinsonGov’t Relations

March of Dimes

Kerri WadeProgram

Association of Women's Health,

Obstetric and Neonatal Nurses

Adriane GriffenProgram

Association of University Centers

on Disability

Patrick JohnsonGov’t Relations

American Academy of Pediatrics

Katie VerbGov’t Relations

Hemophilia Federation of

America

Randy FenningerGov’t Relations

National Blood Clot Alliance

Roberta CarlinProgram

American Association on

Health and Disability

Sara StruweGov’t Relations/

Program

Spina Bifida Association

Developing the Score

• Unique Public Health Role– Your seat at the public health table• Public health jurisdiction

Centers for Disease Control and Prevention

National Center on Birth Defects and Developmental Disabilities

National Center on Birth Defects and

Developmental Disabilities

From beginning to end, a better life for all.

What We Will Discuss

Mission of NCBDDD

Brief Overview of Public Health

NCBDDD’s Work Objectives Thematic Focus Areas Strategic Health Initiatives

NCBDDDFrom 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 Attention-

Deficit/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

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.

SurveillanceWhat’s the problem?

Risk Factor Identification

What’s the cause?

Intervention Evaluation

What works?

ImplementationHow is it done?

Action in Progress 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

JanuaryPartner Briefing and

Kick-off

→ SHI Update→ Plans for 2015

Nov 12th

Friends End of Year Meeting

→ Common messaging

→ Targeted communication plan

→ Cadre of partners around each theme

Oct 29th

Champion Orientation

→ Educated, empowered champions

Champion Role• 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

Family Representative

Role:family contact for

each thematic area

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

Friends Communication Strategy

Communications Strategy 2015Goals: 1. Increase awareness of NCBDDD at CDC and public health agencies2. Increase awareness of how your organization plays a role in public health3. 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 research2. Helping children live to the fullest by understanding developmental disabilities like autism 3. Protecting people and preventing complications of blood disorders4. Improving the health of people with disabilities Audiences:1. Policy makers2. Families3. NGOs

Friends 2015 Strategy

Audience: Policymakers Families NGOs

Friends Leadership Partner: Advocacy CoalitionFamily VoicesEC/Champions

Long Term Goal Short Term WinSMART

Supporting Friends Activities/Timelines

Policymakers (main audience)

EC/Champions

Advocacy Coalition

Increase awareness and value of NCBDDD at CDC and public health agencies Increase recognition of the importance of NCBDDD programs among Congressional and Executive Branch leadership and opinion leaders by finding Congressional champions

Facilitate 10-15 Hill and state visits by May 2015

Integrate Advocacy Coalition talking points into existing member policy efforts and “asks” by March 2015 Develop visual collaterals by March 2015

Families and people with a disability (Secondary Target Audience)

Family VoicesEC/Champions

Increase communication with families and people with a disability or blood disorder and others beyond members of Friends

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!