Education for Patients, Families, and Providers

We continually work to improve and develop educational resources on heart failure and advanced therapies, such as VADs. Our materials, both written and electronic, are designed for a wide variety of user groups including patients, caregivers, and clinical providers.

What is the project focus?

Prior to 2018, pediatric heart failure and Ventricular Assist Device (VAD) education materials was scarce for patients and families. In addition, there was great variation across care centers for staff education and training. VAD therapy is often lifesaving, but there is a high risk of adverse events that are associated with VAD support. When analyzing the care surrounding the adverse events, it was determined that ineffective staff and patient/family education often occurs. Improving and standardizing education is a modifiable risk factor, and it was identified as one of the greatest needs. In pediatric institutions, many different types of VADs are used. Many of the devices used are “off-label,” therefore, industry is not required to provide pediatric-specific education materials. The burden of making effective educational materials at every institution is substantial.

We embarked on an education project to develop materials and a web-based platform for the entire network to utilize.

Who is impacted?

Our collaborative recognized the wide-reaching benefits of having an education platform for all users to have access to life-saving educational materials. These resources are useful for patients, parents/caregivers, siblings, and friends. They are also meant for clinicians, such as physicians, nurses, fellows, and community emergency personnel, school teachers, and anyone else that may need to learn and periodically refresh their knowledge of critical requirements for these patients. 

What are we doing to help?

My ACTION Education offers an accessible, interactive, and improved learning experience for patients, families, and clinicians.

After identifying the need in 2018, we began designing pediatric friendly education materials to help patients and families. The VAD materials designed and developed were the first of their kind for pediatric use, both in print and electronic formats. They were created with a focus on co-production between collaborating providers, patients, and families to achieve comprehensive, user-friendly, accessible, and age and developmentally-appropriate materials. 

We also built a web-based education platform. Since professionally designed pediatric VAD education materials were not available, many pediatric centers adapted their own materials from adult materials, but this led to great variation in materials and most adult materials were distributed in print form. The creation of electronic modules and materials improved the time and delivery process for spreading these materials. My ACTION Education offers an accessible, interactive, and improved learning experience for patients, families, and clinicians. Our novel platform hosts an encompassing menu of educational resources, including but not limited to interactive and electronic education materials, videos of patients teaching patients, infographics for quick visualization, interactive testing and scoring, video games and simulated scenarios, etc.

Provider modules are available to all clinician members in ACTION. Modules include training materials and videos, web-based case scenarios and simulations, infographics and bedside tools, webinars, and harmonized consensus protocols. Quizzes are also available for each module and quiz completion certificates can be emailed directly to clinicians’ education managers.

ACTION is also actively engaged with industry collaborators and co-creating materials when possible. Special thanks to Abbott and Berlin Heart for their collaboration and adoption of our patient/family materials! With the VAD materials launched in 2020, we have since broadened our scope to develop additional heart failure materials in general, as well as muscular dystrophy materials for those patients at risk for heart dysfunction/failure.

What data do we have?


The number of users on our online education platform, My ACTION Education.
(as of July 11, 2023 — up from 975 on June 30, 2022)