Table 5 Reported benefits, challenges, barriers and enablers of patient partner financial compensation

Benefits (n = 16)

Facilitates patient partner participation in research activities across the research project and supports long term engagement

7

Tangible method to demonstrate patient partner appreciation and

5

Supports a sense of equality among team members

4

Challenges (n = 3)

Financial payments can jeopardize disability or social security payments or impact income tax rates (United Kingdom, Netherlands)

3

Barriers (n = 14)

Budget constraints or the research project did not receive funding

6

Lack of an institutional policy or guidance document

6

Failing to consider the cost of patient engagement at the study design or funding application phase

2

Enablers (n = 9)

Sufficient resources and funding

6

Institutional and financial support at the pre-funding stage to support engagement at project onset

3