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 |
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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 |