Heartsight: Co-designing a trusted informational resource to reduce uncertainty and psychological trauma of anyone affected by cardiac arrest

Summary: We will describe the journey of co-designing Heartsight: a survivor & family-driven initiative providing a free, online resource which combines evidence-based content and lived-experience insights to reduce uncertainty and psychological trauma for anyone affected by cardiac arrest.

Synopsis of Presentation: Every out-of-hospital cardiac arrest affects not only the patient experiencing it but also families and lay responders, regardless of the patient’s outcome. Despite their psychological pain, stress, and uncertainty, they are often invisible to the healthcare system and lack accessible, lay-friendly resources to guide them through this traumatic, life-altering event. Indeed, the American Heart Association issued a scientific statement declaring that cardiac arrest patients and families have “unique and complex needs that are inadequately addressed by current treatment recommendations." Uncertainty prevalent throughout the illness trajectory of cardiac arrest due to information deficits is inherently aversive and results in negative affective states including anxiety, depression, posttraumatic stress, and poor sleep behavior. Information-based intervention programs addressing this uncertainty are the highest priority for cardiac arrest patients and families.
Heartsight’s mission is to provide a free, accessible online resource that combines evidence-based content and lived-experience insights to reduce uncertainty and psychological distress for anyone affected by cardiac arrest. Heartsight is a web-based digital health platform that delivers high-quality, comprehensive, easy-to-understand content in media-rich formats including video, audio, infographics, images, and articles. Heartsight content and interface capability are being co-designed and co-created by a multidisciplinary, age, sex and racial-ethnically diverse team of patient-family stakeholders, lay rescuers, first responders, clinicians, and researchers. Patient Led Research Scorecards are being used to evaluate the effectiveness of our stakeholders and research partner collaboration.
In this session, we share the Heartsight co-design journey. We describe partnerships with national cardiac arrest registries and emergency medical services to implement a unique delivery system to fulfill their vision of being the most trusted and first resource for anyone affected by cardiac arrest. We are challenging the status quo in two ways. First, by disrupting the current hierarchical scientific research system and reimagining how diverse stakeholders affected by cardiac arrest with their lived experiences can be intricately involved in co-designing resources intended to benefit them. Second, by providing trusted resources written in lay-friendly ways, particularly catering to low-literacy and underrepresented cardiac arrest communities. This is non-trivial. Currently, the majority of the trusted resources are written for high-literacy audiences of medical journals and textbooks.