Challenges identified (on yellow notes) | Consensus on most important challenges | Initiatives for improvement |
---|---|---|
Roles (treated as object vs. subject) Inequality (being a partner, but we are all different) No matching of expectations regarding work burden When engagement happens too late in the process (e.g., after the research question has been defined) Recruitment (which patients) Hard to reach the project team Inflexible meeting arrangements (when and where) No contact person No communication about the process When you get information that is hard to handle Long days of working/meetings When you are not listened to | Communication | Find each other and share a common language |
Communicate concisely and precisely both orally and in writing—communication is also what is not said | ||
Create possibilities to communicate in different ways | ||
When you get information that is hard to handle | What I (patient partner) want to know and what I don’t want to know need to be outlined in a contract between patient partner and researcher | |
Get help when something is difficult because everything cannot be scheduled | ||
Information about participating as a patient partner must make it clear that you might receive information that is difficult to handle; this may cause some to refuse to participate | ||
Allow the patient partner to retire temporarily during the project. Provide the possibility of an “emergency brake” where you can talk to someone about the difficult stuff you have encountered | ||
Recruitment | Recruit patient partners through general practitioners in order to reach a broader group of patients and not just those already in contact with the hospital | |
Specify the tasks in relation to time, interest and knowledge needed to fulfil the role of patient partner | ||
Researcher and patient partner mutually define clear criteria about what experiences, knowledge and understanding are needed; where you are in your disease trajectory |