Characteristics of PPI partners and methods used to involve PPI partners among those reporting PPI in the survey
| Characteristic* | No. (%) of responses |
|---|---|
| Characteristics of PPI partners* (n = 315) | |
| Adult patients (> 18 yr) | 186 (59.0) |
| Older adult patients (> 65 yr) | 80 (25.4) |
| Caregivers of adult patients | 46 (14.6) |
| Caregivers of older adult patients | 34 (10.8) |
| Parents or caregivers of children or youth | 59 (18.7) |
| Children or youth | 32 (10.2) |
| Patient advocacy group members | 95 (30.2) |
| Members of the public | 107 (34.0) |
| Other | 52 (16.5) |
| Stage of research where patient or public partners were first involved (n = 311) | |
| Pre-protocol (n = 133) or protocol (n = 113) | 246 (79.1) |
| Trial conduct | 48 (15.4) |
| Analysis (n = 1) or interpretation of results (n = 4) | 5 (1.6) |
| Dissemination of findings | 11 (3.5) |
| Don’t know | 1 (0.3) |
| Specific aspects of the study where patient or family partners were engaged† (n = 306) | |
| Designing or developing interventions | 217 (70.9) |
| Developing recruitment (n = 178) or retention (n = 110) strategies | 185 (60.5) |
| Designing recruitment materials | 163 (53.3) |
| Suggesting dissemination strategies | 102 (33.3) |
| Participating in the Trial Steering Committee | 101 (33.0) |
| Presenting findings to a lay audience | 99 (32.4) |
| Setting research topics or questions | 98 (32.0) |
| Developing data collection tools | 99 (32.4) |
| Troubleshooting issues | 93 (30.4) |
| Interpreting data or results | 92 (30.1) |
| Selecting outcomes | 83 (27.1) |
| Writing or reviewing lay summaries | 83 (27.1) |
| Writing or reviewing manuscripts | 69 (22.6) |
| Identifying or screening potential participants | 53 (17.3) |
| Collecting data | 44 (14.4) |
| Preparing presentations for scientific conferences | 37 (12.1) |
| Analyzing qualitative (n = 28) or quantitative data (n = 13) | 31 (10.1) |
| Participating in the Data Safety Monitoring Board | 24 (7.8) |
| Determining the target difference (n = 18) or developing the statistical analysis plan (n = 4) | 18 (5.9) |
| Informing missing data handling | 6 (2.0) |
| Delivering intervention | 4 (1.3) |
| Don’t know | 2 (0.7) |
| Other | 2 (0.7) |
| How patient or family partners were engaged† (n = 309) | |
| Face to face (n = 293) or virtual meetings (n = 42) | 295 (95.5) |
| Email (n = 122) or online forums (n = 14) | 128 (41.4) |
| Surveys | 39 (12.6) |
| Qualitative interviews, focus groups | 9 (2.9) |
| Don’t know | 3 (1.0) |
| Other | 6 (1.9) |