Engaging patient communities in intracranial neuroscience research

Patients who participate in intracranial neuroscience research make invaluable contributions to our understanding of the brain, accelerating the development of neurotechnological interventions. Engagement of patients as part of this research presents unique challenges, where study goals can be distant from immediate clinical applications and require specialized domain knowledge. Yet methods for meaningfully integrating patient communities as part of these research efforts is essential, as intracranial neuroscience guides the application of artificial intelligence for understanding and enhancing human cognition. In order to identify what patients consider meaningful research engagement we interviewed individuals who participated in a study during their Deep Brain Stimulation (DBS) surgery and attended a group event where they interacted with our research team. Analysis of semi-structured interviews identified four main themes: interest in science and the future of clinical care, contributing to science to improve lives, connecting with others, and accessibility considerations. Based on these insights, we propose strategies for transformational participation of patient communities in intracranial neuroscience research with respect to engagement objectives, communication and scope. This approach offers a foundation for sustaining relationships between scientists and communities rooted in trust and transparency, to ensure that impacts of neurotechnology on human health and cognition are aligned with patient needs as well as desired public values.