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