Recommendations for the inclusion of patient representatives in scientific projects and the level of agreement among task force members and the group of experts (n=81)
| Respondents agreeing (%) | |||
|---|---|---|---|
| Recommendations | Patients (n=28) | Professionals (n=53) | |
| 1 | Participation of patient research partners is strongly recommended for clinical research projects and for the development of recommendations and guidelines, and should be considered for all other research projects. | 100 | 96 |
| 2 | Participation of patient research partners should be considered in all phases of the project to provide experiential knowledge, with the aim of improving the relevance, quality and validity of the research process. | 96 | 81 |
| 3 | A minimum of two patient research partners should be involved in each project. | 93 | 68 |
| 4 | Identification of potential patient research partners should be supported by a clear description of expected contributions. | 96 | 98 |
| 5 | The selection process of patient research partners should take into account communication skills, motivation and constructive assertiveness in a team setting. | 100 | 96 |
| 6 | The principal investigator must facilitate and encourage the contribution of patient research partners, and consider their specific needs. | 96 | 96 |
| 7 | The principal investigator must ensure that patient research partners receive information and training appropriate to their roles. | 96 | 89 |
| 8 | The contribution of patient research partners to projects should be appropriately recognised, including coauthorship when eligible. | 100 | 92 |