Building recurring public and patient involvement in adult autism psychiatry and neurodevelopmental research: lessons from the first year of a patient panel and advisory board.

Authors

Kerstin Erdal, Tomas Larson, Eva Billstedt

Published in

Research involvement and engagement. Volume 12. Issue 1. Oct 01, 2026. Epub Oct 01, 2026.

Abstract

Public and patient involvement (PPI) is increasingly emphasized in health and autism research, yet involvement is often organized around individual research projects. Less is known about the practical and organizational processes involved in developing recurring PPI structures across clinical and academic settings. This paper describes and critically reflects on the establishment, implementation, and first-year experiences of two recurring PPI structures in western Sweden: a Patient Panel linked to an adult autism psychiatry service and a Neurodevelopmental Disorders (NDD) Advisory Board based at the University of Gothenburg. The two structures followed different implementation pathways. The Patient Panel was initially anchored to an ongoing research programme and involved autistic adults receiving psychiatric care, whereas the NDD Advisory Board was established from the outset as a broader forum bringing together researchers and representatives of patient and user organizations. First-year activities included review of research materials, ethical and methodological reflection, intervention development, discussion of research findings and clinical service development, and input into broader neurodevelopmental research questions. Contributor input resulted in identifiable changes to research procedures and intervention content, although involvement remained predominantly advisory and final decision-making authority remained with researchers, project leads, or clinical management. Implementation highlighted the importance of institutional context, organizational support, preparation, accessibility, compensation, and mechanisms for follow-up. Establishing the clinically embedded Patient Panel required iterative development of procedures concerning recruitment, data protection, compensation, and organizational responsibilities, whereas the university-based Advisory Board was administratively more straightforward to establish. Across both structures, governance, systematic documentation and follow-up of recommendations, and shared decision-making remained underdeveloped. Considered in relation to AASPIRE principles, several participatory practices were established, while important gaps remained in governance, accessibility procedures, and involvement across research stages. These experiences demonstrate that recurring PPI activities can be established in both clinical and academic settings, while highlighting that their establishment should not be equated with long-term sustainability or institutionalization. Developing sustained PPI requires ongoing attention to organizational procedures, resources, accountability, accessibility, and the distribution of decision-making authority.

PMID:
42823753
Bibliographic data and abstract were imported from PubMed on 02 Oct 2026.

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