Type of PPI explicitly reported before and after the introduction of a mandatory reporting policy
| Involvement type | No. (%) | |
| Before (n=1) | After (n=16) | |
| Study design | ||
| Contributions to the grant application and or study protocol | 0/1 (0) | 3/16 (19) |
| Help to set the research question or commenting on its importance | 0/1 (0) | 4/16 (25) |
| Ensuring the development of, or choice of, outcome measures were informed by patients’ priorities, experience and preferences | 0/1 (0) | 7/16 (44) |
| Patient assessment of the burden of the intervention before the study commenced or involvement in designing the intervention (where applicable)* | 1/1 (100) | 4/9 (44) |
| Study conduct | ||
| Involved in the study steering group or a member of the research team | 1/1 (100) | 6/16 (38) |
| Recruitment and/or implementation of the research | 0/1 (0) | 8/16 (50) |
| Patient/public communication materials for example, patient information sheets | 0/1 (0) | 4/16 (25) |
| Analysis | ||
| Contributed to data analysis | 0/1 (0) | 1/16 (6) |
| Interpretation of study findings | 0/1 (0) | 2/16 (13) |
| Drafting of the manuscript | ||
| Contributions to editing, revising and or writing the manuscript | 1/1 (100) | 3/16 (19) |
| Patients listed as coauthors | 1/1 (100) | 1/16 (6) |
| Dissemination | ||
| Direct involvement of patients led by the research team including the development of materials for dissemination and choosing the most appropriate method of dissemination | 0/1 (0) | 3/16 (19) |
| Indirect involvement through dissemination to patient charities, organisations and groups that may, in turn, involve patients in the process | 0/1 (0) | 3/16 (19) |
| Patient representation informing the content of dissemination materials on a general advisory board for the use of the data used in research | 0/1 (0) | 3/16 (19)† |
*The denominator only includes studies where there was an intervention that is, excludes systematic reviews, population based studies, secondary analyses and so on.
†This includes three papers from the QResearch team with identical statements about some aspects of PI in dissemination, but this PPI was specific to the QResearch database, not the individual published studies and it is not clear how much patients were involved in the individual studies reported.
Responses are not mutually exclusive. For example, if a patient was on the steering group, this will be indicated in the relevant box and in the box about implementation of the research. However, not all those involved in study conduct were made members of steering groups.
PPI, patient and public involvement.