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Table 4 Examples of challenges and considerations of doing PPI

From: The impact of patient involvement in research: a case study of the planning, conduct and dissemination of a clinical, controlled trial

Challenges of doing PPI in research Examples of considerations from the researcher perspective Examples of considerations from the PRPs’ perspective
Funding - Where to apply and how to budget PPI - None in this case
- Changing the level of PPI requires additional funding
- Travel expenses and salary
Recruitment of patient representatives - Which patient representatives (gender, age, patients or relatives, pointed out and asked at the hospital or an open invitation through the patient association) - Worries about living up to certain expectations must be put aside in order to sign up for engagement
- Worries about asymmetric dialogues between academic people and layman must be put aside
- Number of patient representatives (represent the entire patient group, balanced with the number of researchers)
Level of PPI - Consultation, collaboration, co-creation, user-led - Openness about abilities and feelings of inadequacy
- Change of level over time according to research question and request and abilities among patient representatives
Administrative investment - Money investment (costs of meetings, salary, and reimbursements for PRPs, teaching needed in the analysis, funding for participation in a conference) - The costs PPI may have on everyday life (e.g. time spend, confrontations with hard feelings) must be acceptable
- Time and place of meetings to accommodate wishes from both patient representatives and researchers - Alignment of PPI-activities with relatives
- Arranging meals and snacks to pay back to patient representatives and to maintain a cozy atmosphere
- Constant follow-up at meetings or by e-mail on how a task or homework has been received by the patient representatives
- Balance time between small talk and work. Both are essential when doing PPI
- Individual introduction to new members and encouragement to active and equal participation
Intellectual investment - Inclusion and discussion of all thoughts and ideas – even when these do not match each other - Sharing of sensitive topics
- Offering yourself in discussions
- Respect and trust in each other in order to capture true experiences - Willingness to be honest
- Listen to, acknowledge and consider all comments - Dealing with insights that might be difficult to separate from your own situation
- Addressing and maintaining an agreed-upon division of tasks and responsibilities
- Worries about own contributions
- Avoiding information harm - Direct reference to PPI contributions by PI is the easiest way to recognize own impact as a patient representative
- Concerns about work or responsibility overload for the patient representatives
- Concerns about conference participation (performance on panel presentation, understandable topics, welcoming atmosphere)
Progression of disease or death of patient representatives - Respect for a patient representative’s choice to cut down on activities or to stop completely - Open dialogue
- Open dialogue in the group