Table 2

Summary of challenges met by CIs and contributors to PPI in clinical trials

CI interviews (n=21)PPI contributor interviews (n=17)*
Challenges common to researchers and PPI contributors:
 Failure to engage contributors fully or earlyNot being involved from the start;
Infrequent meetings
 Contributors overawed/lacking confidenceFeeling unqualified or overwhelmed
 Failing to clarify to contributors what was expected of themRole expectations (being unsure what was expected of you)
 Worry about taking up contributor’s time
Contributors being ‘poached’
Time constraints
Being in demand by other research teams
 Meeting attendance by PPI contributorsGetting to meetings
Challenges unique to researchers or PPI contributors:
 Finding the right peopleJargon
 Own patient as a PPI contributor (can lead to conflict between clinical and research roles)Interactions within team and being listened to
 Communication difficulties due to ageConcern about appearing confrontational
 Change of PPI personnelConcern about appearing too ‘pernickety’
 Getting other team members to understand/prioritise PPIRemembering ‘what side you are on’
 Underestimating training needs of contributors
 Worry that contributors may lose payment if receiving state pension/benefits
 Disagreement with funders about implementing contributors’ suggestions
  • *One PPI contributor was involved in and talked about two trials which were in this sample, and there were two trials for which we had two PPI contributor interviews each.

  • CI, chief investigator; PPI, patient and public involvement.