Some of the contributors’ challenges paralleled CIs’ accounts while others were unique to the contributors

(table 2). While researchers referred to problems they had experienced in their communication with contributors, sellckchem a prominent issue exclusively mentioned by contributors related to the problems they experienced with ‘jargon’ and the technical language that was used in trials such as statistical or medical terminology and acronyms. Several contributors suggested remedies such as supplying a list of acronyms or a booklet of research terms, or simply that “if they’re going to use jargon, explain it” (PPI 64). A further idea was that the person chairing meetings could try to ensure that discussion about statistical issues or other areas of technical expertise were translated and summarised adequately. Contributors

talked about difficulties in interacting with researchers, including not always feeling listened to by everyone. One contributor who had been invited by her consultant and had previous experience of PPI implied that ‘some doctors’ were unwilling to understand the perspectives of patients (PPI2 27). Another felt that female researchers were more understanding than males regarding problems with travelling or feelings of insecurity, while a further contributor alluded to how in meetings the team sometimes talked about patient experiences in a ‘dispassionate’ way, and although this was not a problem for the individual contributor she felt it might be for others (PPI1 27). Some of the challenges that contributors described echoed those that the CIs has raised. These included lack of clarity about roles, and the difficulties contributors experienced in attending meetings, for instance because

of a health condition. Such practical difficulties could give rise to additional complexities. For one contributor, infrequent meetings meant “not much to build a relationship on” and while academics worked closely together, she had to “work quite hard to keep up” (PPI 16). Contributors also talked about wanting to be more involved in between annual meetings, in ‘shaping the Dacomitinib bid’ (PPI 20) so that it was less focused on the primary clinical outcome, in seeing the intervention itself, and to have initial briefing meetings at the outset of their involvement. Finally, one contributor described it as a ‘downfall’ that he was not receiving feedback or ‘thank yous’ and commented on how important it was to make PPI contributors ‘feel valued’ (PPI 34). Discussion Main findings The path to PPI: plans, actions and complications This is the first study to examine whether plans for PPI, as documented in RCT grant applications, are being implemented.