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American Medical Extended Reality Association Expert Consensus: Best Practices for Patient and Public Involvement in
Tom Norris1,2,3, Ella Tetrault4, Muskaan Mehra4
1American Chronic Pain Association (ACPA), Los Angeles, CA, USA.
Abstract:
Patient and public involvement (PPI) is critical in medical extended reality (MedXR) research to ensure that interventions are relevant, patient-centered, and impactful. This expert consensus from the American Medical Extended Reality Association offers a practical framework for integrating patient voices throughout the research lifecycle, from study design to post-study feedback. Drawing on principles from the Patient-Centered Outcomes Research Institute, Congressionally Directed Medical Research Programs, and the National Institutes of Health, it highlights strategies for meaningful involvement of patient partners, emphasizing inclusivity, reciprocity, and transparency. Key areas of focus include best practices for recruiting and compensating patient partners, ensuring diversity and representation, simplifying communication, and addressing ethical considerations. The expert consensus addresses challenges in patient engagement specific to MedXR, offering solutions such as iterative feedback loops during prototype development and collaborative safety monitoring. Case studies provide real-world examples of how PPI insights have enhanced MedXR research, improving accessibility, relevance, and equity. This document serves as a comprehensive resource for researchers, developers, and clinicians, supporting the development of MedXR interventions that are not only scientifically rigorous but also deeply aligned with patient and public needs and priorities.