Table 3 Expectations for involvement
| Â | Patients | Researchers |
|---|---|---|
Roles | • Saw own role in sharing perspectives and engaging in discussions • Wondered what would be expected from them and what influence they could have • Wondered about counterpart in patient board | • Own role expectations ranged from rather passive supporting force to active engagement • Hoped for collaboration on equal basis |
Topics and methods | • Unsure about the direction of the patient board but willing to be surprised • Mostly not able to specify topics they want to discuss | • Described concrete topics for patient board • Patients should be available for question, feedback and discussions |
Communication and culture | • Having results at the end of a meeting as important factor for satisfaction • Hoped for open, respectful exchange • Opinions shall be heard | • Wished for fixed structure to ensure regular communication • Hoped for open exchange and good feedback culture |