The ‘Living Lab at Home (LLAH)’: Taking developmental and behavioral research into the community

As researchers and clinicians, we often ask: How do children and youth think, act and behave in their daily lives outside of the lab? What are they feeling? How are they actually living? With whom are they interacting? How do we facilitate positive, lasting change, the kind that takes hold in a child’s daily life and that improves health and well-being? For decades, we have relied on questionnaires and lab-based experiments to answer these questions and develop interventions. With advances in digital technology, we now have the ability to address the limitations inherent to static ‘point in time’ methods, and answer questions about mood, daily function, stress regulation and mental health in the ‘real-world’.

COVID-19 restrictions on in-person research, and the lack of knowledge on how to adapt remotely delivered research methods in developmental disabilities, led us to the creation of The “Living Lab at Home” (LLAH). The LLAH offers a novel approach to in home data collection system using smartphones, wearables and salivary stress-related biomarkers to investigate real world experiences of children and youth across the developmental spectrum, as well as typically developing children with chronic illnesses. This novel and timely approach increases the accessibility to research for youth and families who may not typically be included in data intensive, lab-based studies. A key component of the LLAH is its focus on human-centered design, where an iterative process of patient engagement is used to establish the methods, study its implementation and receive feedback to refine methods to ensure that the patient and family voice is featured prominently in all aspect of research. Ultimately, the LLAH platform should also allow us to ask novel questions about whether the act of tracking and understanding ones’ personal data could have an outcome effect perhaps, initially as engagement, then possibly extending to behavior change.

In this presentation we will describe the LLAH project, review what parents and their children told us about LLAH based research and describe what we learned about data visualization as a part of the LLAH. We are looking forward to an engaging conversation.

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