Table 6 Patient partners’ additional comments on the researcher-identified initiatives for improvement
Challenges | Power | Ethical issues | Social inequality | Time | Recruitment |
|---|---|---|---|---|---|
Patients’ additional comments | The challenge is more about securing equality than about power | Control/oversight of the researchers—to ensure they are using the patient partner input actively and appropriately | It is difficult to ensure equality | Flexibility in relation to meeting times, e.g., once a month, possibly during working hours | In relation to recruitment, dropouts must also be considered |
Power over weak patients | Gender variation must be ensured | Accept that some cannot join/be engaged | The first meeting must include a clarification of expectations | Wider recruitment—e.g., general practitioners, and from patient associations and the media | |
Meet somewhere else—at hotel or go out for dinner | The duty of confidentiality was emphasized | Other patients may support weak patients | Take the plunge even as an inexperienced researcher or patient partner; otherwise, you will create a block for yourself | ||
Preparation of the patient partners was emphasized | Translate what is being said—also afterwards | Mentor for the researcher and the patient partner | |||
Bringing in a contact person—this could be a clinician or another assistant with whom you can have a relationship. It can be a support person. If this is a doctor/researcher, it may block input | |||||
Flexibility was emphasized |