Table 4 Examples of challenges and considerations of doing PPI
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 |