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 Wilkinson Gov’t Relations March of Dimes Kerri Wade Program Association of Women's Health, Obstetric and Neonatal Nurses

Adriane Griffen Program Association of University Centers on Disability Patrick Johnson Gov’t Relations American Academy of Pediatrics

Katie Verb Gov’t Relations Hemophilia Federation of America Randy Fenninger Gov’t Relations 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

Centers for Disease Control and Prevention National Center on Birth Defects and Developmental Disabilities From beginning to end, a better life for all. Coleen A. Boyle, PhD, MSHyg Director

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 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. Surveillance What’s the problem? Risk Factor Identification What’s the cause? Intervention Evaluation What works? Implementation How 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 January Partner Briefing and Kick-off →SHI Update →Plans for 2015 Nov 12 th Friends End of Year Meeting →Common messaging →Targeted communication plan →Cadre of partners around each theme Oct 29 th 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 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 Short Term Win SMART 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 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 Voices EC/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 eg. Create a blog where families and individuals with disabilities can submit/post their stories

Champions: Making a Difference Across the Lifespan Thank you!