CIs talked about the problems of failing to engage PPI contributors fully or early enough to inform changes in study design, and ‘under-utilising’ (CI 101) PPI contributors by not involving them in the planning stages, thereby making buy inhibitor PPI less thorough or, as one informant noted, less ‘robust’ (CI 101). They reflected on the potential detrimental consequences of such failings on the relationship between researcher and PPI contributors, for example being less likely to “form a bond and get loyalty” (CI 14). Finding and engaging the right people
with an interest in and understanding of the research, and with the necessary confidence, commitment and impartiality was another major stumbling block: You hear that some consumers get involved […] because they have a particular point of view or axe to grind […] in those circumstances it could be very detrimental to a trial, to be driven by somebody who has had a bad experience […] and those are the ones you don’t want on your team. (CI 5) You’ve got trialists in the [meeting] who are trained to run clinical trials. And then you’ve got one lay representative who may be slightly intimidated by everyone else, who’ll not be able to truly give their views, may be slightly overawed. (CI 14) Table 2 Summary of challenges met by CIs and contributors to PPI in
clinical trials Researchers also pointed to the practical difficulties that contributors experienced in attending meetings due to geographical distance or time constraints (table 2). They emphasised how teleconferences could be less conducive to forming a relationship with PPI contributors than face-to-face meetings. They also reported problems relating to communication and mutual
comprehension between themselves and PPI contributors. Some described PPI contributors as struggling to understand the nature of research, or the distinction between research and clinical practice, and one CI referred to his own ‘naivety’ (CI 55) in underestimating how much training PPI contributors might need. CIs described difficulties getting other staff such as TMs to understand or prioritise PPI. This included one CI who noted that some investigators are unable to ‘cope’ with having a “working relationship with service Batimastat users” and “can’t let go of the fact that [they] are people they study”: It’s a mindset […] an attitude where you have an equal partnership. You’re working together not studying these people. You’re asking for their expertise and I’ve found that some people who’ve worked with me, that comes easily and some people absolutely never get it. (CI 20) CIs remarked that they were unclear about what to expect in relation to PPI and worried about taking up the contributor’s time.