In the next section we focus on the less formal, responsive, form of PPI in which researchers ‘reach out’ for specific PPI input as and when needed. ‘Reaching out’—responsive roles (n=14) Fourteen trials embraced further information some form of responsive involvement, although trial documents for two (10 and 79) had not indicated any plans

for PPI (table 1). The remaining 12 had stated in their documented plans that they would, or already did, engage with PPI groups or panels rather than just with the one or two individuals that was typical of oversight and managerial PPI. Data from application forms, project descriptions and informant interviews showed that this responsive activity sometimes entailed seeking advice from PPI groups prior

to the application for funding. Informants noted that many trialists continued to seek advice from such groups during the trial regarding specific issues. Other trials began a responsive approach once the trial had begun, often as and when particular problems arose. Most trials implemented all aspects of their documented plans but in one case (trial 76) it was unclear from the CI interview whether specific plans to seek advice of a new advisory group before recruitment were implemented. Trial 20 used responsive alongside managerial PPI, including having a PPI co-applicant. The trial had ended at the time of the interviews, and the researcher stressed that the responsive

PPI had been ‘crucial’ when faced with specific problems. The CI explained that one PPI contributor would attend research team meetings: but I then reached out to other people in addition when we needed more help […] I think what was crucial was being able to get input, not in terms of regular intervals but […] when you’ve got a problem. (CI 20) Further illustrating the flexibility that responsive PPI allows, in her interview one of the PPI contributors on the Cilengitide same trial (who on this particular trial had a managerial role), advised researchers to ‘have some understanding’ of the needs of PPI contributors. She then went on to refer to another contributor on the same trial who did not attend project meetings but who operated in a more responsive mode outside of meetings. It appeared this arrangement had evolved to accommodate the needs of the latter contributor, who, it seemed, found meetings difficult. She didn’t really know what to do, so I think it was much more a one-to-one conversation which is what she was happy with rather than sitting in a committee. (PPI 20) Documented plans for trial 7 involved a combination of oversight, managerial and responsive modes.