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Table 4 Examples of direct changes made to our studies during project development consultations with PPI members

From: Patient and public involvement in designing and conducting doctoral research: the whys and the hows

Comments from PPI members Direct changes made by researcher
You may experience recruitment challenges as you are involving busy wards and clinical staff Questionnaires were made as simple as possible, with realistic timeframes given to complete, accounting for holiday periods
You don’t define ‘interventions’ so it is difficult to understand what you are going to ask Additional wording was developed to clarify the term ‘intervention’ and added to the PIS
The Delphi process is not clear to me: patients are asked to revise their answers at every round? How is the agreement reached: are they forced to choose among the most chosen answer, even if they were not their first choice? Additional wording added on PIS to clarify:
“You will get a summary of the survey results so that you have an opportunity to review your previous score and if appropriate, change your score or add further comments”
The PIS is too lengthy and older patients may not be able to read it all PPI members suggested using a Part1/ Part2 style of PIS, whereby Part 1 gives a brief overview, allowing patients to decide whether to continue reading on if they are interested
The PIS is too wordy and may deter people from taking part Changed format to a patient-friendly, colourful brochure and prioritised wording to illustrate the points that PPI highlighted as important to them
Some older patients may prefer pictures rather than text to help them understand the research The group designed a pictorial version of the research journey which was included within the PIS and used to illustrate the study when discussing with potential participants
At what time points will you interview patients? PPI members mapped out their experiences of post-discharge events (e.g. when medicines are usually delivered, when GP reviews are held). Interview milestones were then agreed at 2 weeks, 2 months and 6 months post-discharge. Participant burden was also discussed and it was advisable to let the patient settle in at home for at least a week before contacting them
Interviews are estimated to take one hour long, this is felt to be appropriate in our experience Interviews were described as no longer than 60 min in length in the PIS
Our experience is that patients also see nurses and pharmacists alongside doctors in the clinic Recruitment strategy was adapted to include nurses and pharmacists
Reimbursement for participation in the research needs to be accessible for patients The PPI members agreed which high street gift voucher options would be of most value to participants