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Table 3 Authors’ recommendations to enable positive PP experiences

From: The experience of patient partners in research: a qualitative systematic review and thematic synthesis

Finding (summarized)

Recommendation

Some challenges can be overwhelming to PPs

Provide adequate support to PPs in their tasks

PPs who can perceive the impacts of their contributions feel useful, whereas those who do not feel useless

Provide feedback to PPs about their contributions

PPs who receive external validation of their contributions feel valued

Clear roles increase PPs’ confidence

Ensure that PPs understand their roles

Explicitely state the purpose of PPs’ presence to all activities

PPs who can decide their level of engagement feel respected

Discuss PP’s desired level of engagement

Be flexible with PPs’ level of engagement over time

Convenient logistics enable PE. Inconveniences lead to PPs dropping out

When organising PE, consider PPs’ constraints related to other commitments, illness, transport, and financial issues

PPs who are confident in their competence are enabled to contribute to PE, whereas those who do not feel anxious

Provide training or preparation for research activities for PPs who desire these

Power differentials lead PPs to feel less valued and less useful

Adopt proactive behaviours to abolish power differentials

Professional researchers’ attitudes are an important factor affecting team dynamics

Be open, inclusive and respectful to PPs

Informal team atmospheres enable power balance

Organize informal social activities, such as team meals

Meaningful relationships between team members lead PPs to feel valued and enables trust

  1. PE patient engagement, PP patient-partner