Table 5 Challenges to engaging patient partners in complex intervention research and initiatives to address them—identified by patient partners

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