| Sammanfattning: | <p><b>Background</b></p> <p>Participatory trials conducted over the internet are growing in scope with minimal guidance for Patient and Public Involvement (PPI). Replication and the use of trial findings in decision-making may depend on the methods used to conduct and report these trials. </p> <p><b>Aim</b></p> <p>To assess which research methods might be adapted to improve the conduct and degree of patient and public co-production within trials and in the work leading up to them. </p> <p><b>Methods</b></p> <p>A mixed-methods participatory action approach was used which included a blend of different studies, as noted under Findings.</p> <p><b>Findings</b></p> <p>Overall, I have shown why and how research teams struggle with building protocols for online trials and the design, conduct, and reporting of public involvement in trials generally and specifically in online trials. They express conflict about where and how to report PPI succinctly without interfering with reporting and research discussion. For instance, my systematic overview provides background from existing research on PPI in clinical trials’ design generally and my thematic analysis of social media comments about clinical trials found PPI increases the quantity and quality of patient-relevant priorities and outcomes, enrolment, funding, design, implementation and dissemination and yet roles and research boundaries were not clearly understood. An assessment of reporting quality and the methods used for self-recruited online trials of self-management health interventions, which I augmented with a survey of authors of online trials reporting quality found methods were poorly reported and seldom replicable. While a series of analyses on the use of public involvement statements in The BMJ, and surveys on supplementary materials, data sharing and dissemination found that simply requiring reporting of these areas increased the quantity and then quality. Finally, an online Delphi identified a consensus about what to include in the protocol for a participatory online trial.</p> <p><b>Conclusions</b></p> <p>This thesis demonstrates co-production with the public across multiple research designs with minimal funding is possible and improves research. Guidance for protocols and reporting methods in participatory online trials was identified as beneficial by stakeholders. The post-thesis development of a multi-use online trial participatory protocol template, online training and the research reporting guideline is underwritten by Stanford University.</p>
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