Skip to main content

Table 2 PPI activity log

From: Reporting and appraising the context, process and impact of PPI on contributors, researchers and the trial during a randomised controlled trial - the 3D study

Activity Demonstrable impact
Considered the research proposal and its relevance to the priorities of the targeted group of patients Could state in the funding proposal that the intervention addressed the priorities of patients with multimorbidity.
Commented on study design and advised on consent procedure and patient response After the pilot study, the trial management group decided that a specific decline form would not be included in the invitation pack for the trial. However, the PPI group felt that there should still be a means to actively decline so that patients were not sent reminders. We agreed that participants could return a blank questionnaire as a means of declining and changed the invitation letters accordingly. Only those who did not send any response to the invitation were reminded.
The group later highlighted concerns that patients might have about their questionnaire responses being seen by their health care team. As a result, a statement was added to the front page of follow-up questionnaires that patients’ answers would not be shared with their surgery
Gave feedback on recruitment documents for patients including information sheets, consent forms and invitation letters to patients Information sheets were changed from a two-column format to one and the language was simplified and clarified.
Gave feedback on patient questionnaires Changes made to the formatting to make them easier to read for partially-sighted people and the layout clearer. Changes to the first page to emphasise appreciation of patients taking time to complete them. Some things they would have liked to change, e.g. wording of questions, were not possible due to the use of validated measures.
Contributed to developing a new measure of treatment burden The questions in the measure were shaped by PPI contributors’ responses to an existing measure and the new measure was tested on them and refined before being piloted
Took part in a pilot focus group to help develop the focus group schedule for patients participating in the process evaluation The order of the focus group schedule was changed following feedback to make it flow better and the questions were made more open.
Contributed to development of training for clinicians taking part in the trial Provided comments on their care and what was important to them in receiving care for multimorbidity to use as quotes in the training slides. One PPI contributor was video-recorded in a role play consultation with the CI for use in training. However, this was not eventually included. Emphasised the need for the training to put the patient’s perspective more strongly which was reflected in revisions to the training made following the pilot phase.
Advised on content and format of the study webpage and contributed to content Wording was changed from managing patients with multimorbidity to treating patients with multimorbidity. A picture was changed to show a female GP with a male patient. Suggestions for links to other resources were incorporated. A video was recorded of several PPI contributors discussing the 3D study of which an extract was uploaded to the website.
Advising on qualitative interview schedules and on what to look for in observation of consultations that would indicate patient-centredness from their perspective The interview schedules and observation checklists were revised to incorporate their comments
Two PPI contributors assisted with qualitative data analysis as second coders and the group commented on selected transcripts and recordings The PPI contributors coding affirmed that of the process evaluation researcher and the PPI group’s comments helped with judging the patient-centredness of recorded intervention consultations
Providing feedback on a planned conference presentation Changes were made to the presentation that reflected PPI contributor comments and made it easier to follow by changing the order of the slides
Advised on content and format of the patient newsletter Suggestions regarding pictures and content were incorporated e.g. changing the wording from management to treating and the text in the dark boxes was changed to a colour better for visually impaired people
Dissemination The group suggested means of disseminating to community and patient groups that were incorporated into the dissemination plan
Publishing their experience of PPI in the 3D study Several PPI contributors initiated the idea of writing a paper on the PPI in the 3D study which has led to this paper. Three of them (SC, KP, EB) have been actively involved in drafting it.