What should I bear in mind?

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  • Training: Not enough knowledge about effective patient participation can get in the way of cooperation between you and the experiential expert. You can prevent this by both following a training course. PGOsupport and School for Participation offer training courses for researchers and patients. 
  • Time planning: Finding a suitable experiential expert takes time. Therefore, submit requests well in advance. It is wise to invite more than one patient, as a patient may at the last minute be unable to attend due to their illness.
  • Appreciation: Patient participation entails at least an expense allowance for the participating experiential experts. But also think of gift vouchers as a thank you for their time. Do not forget to factor these costs into the budget.
  • Discussing expectations: It is important to discuss the expectations of the collaboration between you and the experiential expert in advance. This prevents disappointments.
  • Feedback on results: Experiential experts like to see the results of their input during and after the research. So make sure you give them feedback about this. Experiential experts feel more valued as a result and are more willing to help you again in the future.

These conditions are based on the article by de Wit et al. (2016)