Table 1 Key principles of Co-production in the DecodeME study
Principle | Example in DecodeME |
|---|---|
Sharing of power | Parity among members of the project’s Management Group: a person with ME/CFS, a charity CEO and a scientist |
Including all perspectives and skills | PPI representatives equally contribute to every team meeting and decisions. Managing the pace of the study to ensure that all team members can contribute fully |
Respecting and valuing the knowledge of all those working together on the research | Postponement of a submission to a research ethics committee when it became evident that documents written by scientists could be improved substantially by people with ME taking advantage of their lived experience |
Reciprocity | Documents and messages open to all project partners |
Building and maintaining relationships | People with ME/CFS lay at the heart of DecodeME’s inception, planning and launch |