Parent Heart Watch

Parent Heart Watch (PHW) seeks to change systemic protocol and policy on how communities prepare for, respond to and prevent SCA in youth. PHW is singular in its role as the only national voice dedicated to the prevention of SCA in youth. The mission of our health and human services nonprofit 501(c)(3) is to lead and empower others through educating and advocating for change, with a vision to eliminate preventable deaths and disabilities from SCA in youth by 2030. Our program drives the national dialogue on youth SCA prevention, enabling PHW leadership to motivate parent, education, sports and medical communities to pursue and evolve better prevention policy and protocol.

Studies definitively show that robust cardiac risk assessments, preventative heart screenings, CPR training, AED placement and cardiac emergency response plans save lives. What’s lacking is education and advocacy to motivate stakeholders to implement these prevention strategies.

Operation Prevention is our comprehensive program to advance sudden cardiac arrest prevention in youth. Our national movement is a dynamic and transformative platform that strives to Create a Culture of Prevention by:

• cultivating prevention champions and empowering them to create life-saving community programs and advance statewide advocacy,
• architecting collaborations with national school, sport and medical associations to promote more robust SCA prevention protocol,
• equipping parents and the general public with critical tools to protect young hearts.

Many of our champions are parents who have lost a child to sudden cardiac arrest, or have a surviving child living with a heart condition, and have chosen to marshal their personal experience to protect other families from this catastrophic event. Joined by medical practitioners, allied health professionals and other prevention advocates, we are advancing models for change that empower communities to prevent a tragedy that could be a heartbeat away. These champions drive our board leadership, as well as our medical advisory committee, which is comprised of veteran and published practitioners advancing SCA prevention practice.

The question is often asked: If we can prevent young people from dying, why aren’t we? Our answer is: Together We Will.

Because there is no national standard for prevention of SCA in youth, our outreach programs exemplify innovative and effective working models that provide real-time solutions to fill this gap in preventative heart practice and protocol where kids live, learn and play.

Annual National Heart to Heart
Across the last 15 years, Heart to Heart has become the national venue hosting a coalition of prevention champions representing 40 states who convene each year to be empowered and equipped to advance community programs that drive the demand for change. These programs impact hundreds of thousands of youth, parents, educators, coaches, medical and allied health professionals. Conference speakers focus on the latest advances in research and medicine, best practice models for early detection cardiac risk assessment and screening, AED and cardiac emergency response plan installation and skill set augmentation for champions to develop and sustain community-based outreach and prevention programs. Sessions will address innovation, new studies, data capture, intervention, training, policy-making, advocacy and collaboration.

Get Charged Up!
As a co-author with the American Heart Association and 12 national health and safety organizations of the Cardiac Emergency Response Plan for Schools policy statement, template and implementation resources, this program models the importance of AEDs and Cardiac Emergency Response Plans (CERP) in schools in the absence of a national mandate to protect school campuses. PHW donates an AED to schools that work to implement a CERP. A free toolkit with templates and resources is also available to any school or facility.

Educational Advocacy
We educate change makers in school, sports and medical communities on the critical need for better SCA prevention practices and protocol anywhere youth congregate. Through committed advocacy we forge meaningful partnerships that inform thousands of professionals across the country. We track youth lost to sudden cardiac arrest, which was the underpinning of our ability to catalyze the national Sudden Death in the Young Registry. We partner on research studies to affect policy change and co-author statements and resources to highlight the critical need to elevate prevention standards.

Take the Prevention Promise
National call-to-action campaigns educate communities and equip hundreds of thousands with free SCA prevention resources for families, schools, teams, community centers, workplaces and medical practices. Through social media, printed and digital tools, articles, videos and more, we mobilize the next generation of life savers to recognize the incidence of SCA in youth and demand comprehensive cardiac risk assessment and cardiac preparedness to protect young hearts in youth communities.

Examples of what this coalition has collectively facilitated include:

• Hosted 15 annual conferences &2 CMEs featuring inter/nationally renowned speakers
• Advocated for passage of 40 SCA-related legislation in 24 states
• Placed 7,300 AEDs in schools and youth centers
• Trained 501,000+ to use CPR/AED
• Provided ~700,000 free/low-cost youth heart screenings
• Distributed thousands of free educational resources
• Featured in news reports, including The Today Show, 60 Minutes Sports
• Co-authored the AHA Cardiac Emergency Response Plans for Schools (CERPs)
• Successfully implemented CERPs in 94 schools/30 states through Get Charged Up!, now protecting 90,000+ hearts. For 41% of schools, this was their first AED; 73% did not have a dedicated CERP, and 32% reported having had an SCA on their campus.
• Catalyzed establishment of the Sudden Death in the Young Registry, an ongoing collaboration between the National Institutes for Health and Centers for Disease Control to affect accurate post-mortem reporting of SCA in youth
• Partnered on ample research to establish best practices for SCA prevention, including informing various studies with our own national database of SCA in youth
• Served as inaugural members of the Cardiac Safety Research Consortium’s Think Tank, and partner on current effort to establish national SCA screening data warehouse to validate the efficacy of standardized heart screening for youth.
• Co-authored many industry expert articles to illuminate the critical need to establish prevention protocol
• Earned a seat at the table representing SCA prevention in youth with national policy-makers, including the National Task Force for Cardiac Emergency Response Plans in Schools, American Academy of Pediatrics, American Academy of Nurse Practitioners, National Athletic Trainers’ Association/Youth Sports Safety Alliance, Cardiac Safety Research Consortium, National Cardiac Arrest Collaborative, EMS Agenda 2050, Cardiac Arrest Survival Summit, U.S. Heart Rescue (mandatory SCA reporting), National Fire Protection Association (controls Life Safety Code, where we seek to add AEDs), School-Based Health Alliance, AASA, SHAPE America, NASN, NATA/Youth Sports Safety Alliance

What’s next is to continue to advance the impact of our programs and advocacy, as well as launch new initiatives, including the development of a CNE on cardiac emergency response planning for school health professionals. As we move towards our vision to eliminate death and disability from preventable sudden cardiac arrest in youth by 2030, we are embarking on The Next Decade of Prevention.