Table 5.
Patient and public involvement (PPI) in stages of the research process (n = 71)
| Number of trials (%) | |
|---|---|
| Research design | 58 (81.7%) |
| • Research topic or question | 16 (22.5%) |
| • Funding application | 33 (46.5%) |
| • Intervention design | 21 (29.6%) |
| • Participant information materials (e.g. information sheets, consent forms, recruitment adverts) | 51 (71.8%) |
| • Data collection tools (e.g. questionnaires, interview schedules) | 36 (50.7%) |
| • Recruitment methods | 29 (40.8%) |
| • Retention methods | 19 (26.8%) |
| • Do not know | 1 (1.4%) |
| • Othera | 2 (2.8%) |
| Undertaking the research | 17 (23.9%) |
| • Promoting the trial to encourage recruitment | 9 (12.7%) |
| • Identifying or screening potential participants | 8 (11.3%) |
| • Taking consent from participants | 1 (1.4%%) |
| • Collecting research data | 2 (2.8%%) |
| • Do not know | 2 (2.8%) |
| • Otherb | 1 (1.4%) |
| Analysis and/or interpretation of results | 22 (31.0%) |
| • Analysing research data | 3 (4.2%) |
| • Interpreting data or results | 16 (22.5%) |
| • Do not know | 1 (1.4%) |
| • Otherc | 3 (4.2%) |
| Dissemination of findings | 42 (59.2%) |
| • Writing or reviewing research reports | 11 (15.5%) |
| • Writing or reviewing lay summaries | 32 (45.1%) |
| • Presenting the findings at a research conference | 6 (8.5%) |
| • Presenting the findings to a lay audience | 24 (33.8%) |
| • Suggesting routes/platforms for dissemination | 30 (42.3%) |
| • Do not know | 3 (4.2%) |
| • Other | 0 (0.0%) |
| None of the above | 0 (0.0%) |
| Otherd | 2 (2.8%) |
aOutcome measures (n = 2)
bDeveloping a video/DVD to aid informed consent (n = 1)
cReviewing interim reports at Trial Steering Committee (TSC) meetings (n = 1); discussing results with PPI group (n = 2)
dGeneral oversight or management of the research (n = 2)