Table 4 Challenges to engaging patient partners in complex intervention research and initiatives to address them—identified by researchers
Challenges | Time | Recruitment | Ethical issues | Power | Inequality |
|---|---|---|---|---|---|
Initiatives towards improvement | Clarification of roles and tasks | Identification of the target group | Relevance to both the patient and the researcher, and creating value | Attention to the dialogue | Establish relationships/people skills |
Training of both researcher and patient partner | Creating a relationship | Thorough preparation and follow-up | Preparation of patient partners and researchers for the task and collaboration | Interpretation agreed by patients and researchers | |
Common focus | Professional patient partners and a user panel | Code of ethics must be drawn up | Make it clear that the researcher is dependent on the participants/patient partners | Adaptation in relation to structure, time, method and flexibility | |
Structure and detailed plan | Focus on patient partners' contribution in relation to recruitment | Collaboration agreement between patient and researcher | Facilitate the process so that everyone has an opportunity to participate | Contact person | |
Framework and strategy | Reconciliation of expectations in relation to purpose and scope | Preparation of a confidentiality agreement | Environmental change | ||
Clarification of the task | Number of participants must be considered | ||||
Taking the plunge even as an unexperienced researcher |