Researchers felt that involving contributors beyond an oversight role, that meantime is, not just as a member of the steering committee but in a managerial or responsive capacity helped to foster meaningful PPI. In terms of responsive PPI, liaison with relevant patient panels or groups may be particularly helpful when more diverse perspectives or wider consensus is needed; individuals might also consider whether surveys (eg, of support group members) would be useful in answering ‘burning questions’, for example, regarding the acceptability of timing or format of interventions or data collection. Communication, clarification and interaction “I can’t understand why they use me. I just sit there bewildered” Negotiate

with contributors at an early stage about what they can bring to the trial and what they want to bring Determine whether this matches the trial’s needs and clarify roles and expectations Be sensitive to contributors’ needs and preferences Communication between researchers and PPI contributors is crucial at the outset to clarify roles and expectations, and throughout the trial to optimise engagement and provide feedback about contributions. It may be that particular contributors do not have the insights a trial needs, or maybe trialists need to rethink their plans for PPI in the light of experience.

Researchers should avoid seeming “dispassionate” during meetings when discussing a particular illness or condition that impacts on the lives of PPI contributors, and make a genuine effort to understand contributors’ points of view. Language of research “Break it down into a language everybody understands.” Minimise and explain jargon; Provide glossaries and ‘translations’ where applicable. Researchers and contributors should discuss their written and verbal communication preferences

and how to minimise and explain jargon. Suggestions for minimising jargon included lists of acronyms or glossaries of research terms. PPI contributors should be prepared to speak up if there is a problem and, with the help of researchers, be willing to acquaint themselves with specialist terms over time. Budgeting for PPI “University didn’t want to pay him the money” “We had money in the pot but only for one PPI” Budget for PPI—think about contributors’ time plus expenses. Explore opportunities for pretrial support for PPI. Well thought-through plans will help Dacomitinib inform how much to ‘cost in’ for PPI. Consult with administrators in your organisation at an early stage to iron out processes for payments to PPI contributors. Talk to contributors to make sure they will be happy to accept reimbursement beyond expenses. Find out whether there are any local or national resources to support PPI prior to funding applications. Fit for purpose PPI “The person we chose had very little engagement, it struck me as a complete waste of time” Agree what type of PPI would be appropriate and understand why.