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Background Mental health difficulties are common for autistic people; however, almost no interventions have been co‐designed with the autistic community. Co‐design has the potential to add important insights from lived experience into intervention design, but there are currently limited examples of how rigorously to undertake this practice. This paper details a worked model of co‐design and its process, focussed on adapting an evidenced parent‐led intervention for non‐autistic child anxiety (HYC), to meet the needs of young autistic children. The aim is to provide an example of co‐design, integrating autistic, parental, academic, clinical, experience and expertise. Methods Using prior literature and theory, including Experience‐Based Co‐Design, we developed an iterative and collaborative process between the research team and an expert reference group (ERG). The research team comprised autistic and non‐autistic members. The ERG included parents (autistic and non‐autistic) of autistic children with anxiety problems, autistic adults with experience of anxiety problems, and clinicians with experience supporting autistic children with anxiety problems. The ERG and research team reviewed information from qualitative research interviews with autistic children with anxiety problems and their parents along with information from clinical experience and the academic literature to reach consensus on the adapted intervention design. Results The creation of a truly co‐designed intervention that includes a neurodiversity‐affirmative perspective, alongside CBT techniques. With anxiety problems experienced by autistic children being framed by combining the impacts of being neurodivergent in a neurotypical world, developmental science and well known cognitive behavioural models of child‐anxiety. Conclusion Co‐design can help to integrate multiple perspectives and result in the creation of interventions that are potentially relevant and acceptable to autistic people, their family members, and clinicians. Co‐design of new interventions, including autistic interventions, is now strongly advocated; but there are very few reports to date of the actual process of such co‐design in practice with the autistic community. We report on such a co‐design process in practice, following current guidance, for an anxiety intervention for young autistic children. We show how co‐design process can help to integrate multiple perspectives and result in the creation of novel co‐created interventions.

Background Public involvement in research is an established part of the research process in the UK, however there remain questions about what good public involvement in research looks and feels like. Until now public involvement practitioners, researchers and members of the public have looked for answers in examples shared across networks, published case studies, guidance and research articles. Pulling these strands together, the UK Standards for Public Involvement provides six statements (standards) about public involvement in research. They were produced by a partnership of organisations from Scotland, Northern Ireland, Wales and England with contributions from involvement practitioners, public partners, researchers and research funders. Main body Each standard has reflective questions, which are designed to encourage standard users to use approaches and behaviours that improve involvement, over time. The standards are designed to be used as a practical tool, and reflect the agreed hallmarks of good public involvement in research for example, flexibility in approaches used, shared learning, and mutual respect. The standards development process is described from the initial idea and scoping, via the appraisal of existing standard sets and integration of values and principles in public involvement in research. The collaborative writing process of and consultation on the draft standard set is described, together with what changed as a result of feedback. The initiation of a year-long testing programme with forty participating research organisations, the experiential feedback and the resulting changes to the standards is summarised. Conclusion This commentary paper describes, in some detail, a process to develop a set of six standards for public involvement in research in the UK. Producing a complex, national public involvement initiative is not without its challenges, and in supplementary material partnership members reflect on and share their experiences of standards development. The next phase of integration and implementation is explored with concluding comments from those that tested and helped improve the standards.

Doreen Tembo and colleagues argue that small changes as well as larger system-wide changes can strengthen citizens’ contribution to knowledge in health research