Discussion: The Evolving Science of Patient Involvement

Abstract

Abstract In this chapter, we discuss the evolving landscape for patient involvement as illustrated by the preceding two chapters. While this volume is focused on patient involvement in health technology assessment (HTA), we also highlight the growing use of similar methods in other decision-making contexts in health. Chapter 6 details Project HERCULES, a large multi-stakeholder collaboration led by a patient organisation that has developed research to support HTA of medicines for Duchenne muscular dystrophy (DMD). This approach is highly specialised to suit the DMD context, though lessons learned from this work can be translated to other settings. Chapter 7 discusses the use of artificial intelligence (AI) in healthcare research. Using AI can reduce participant burden and allow new types of research on the patients’ perspectives that would not otherwise be possible. There are ongoing concerns about the accuracy and ethical issues of AI that indicate the need for best practices, especially for patient involvement, in such studies.

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