What should you consider?

• Training: Limited knowledge of effective patient involvement can hinder collaboration between researchers and patient experts. Training in patient involvement can help you establish an effective partnership.
• Planning: Finding a suitable patient expert takes time, so make sure to submit requests well in advance. Consider involving more than one patient, as someone may need to cancel at short notice due to their health.
• Recognition and compensation: Patient involvement should at least include reimbursement of expenses incurred by participating patient experts. You may also consider other ways of recognising their time and contribution, such as a gift voucher. Make sure to include these costs in your research budget.
• Discussing expectations: It is important to discuss expectations about the collaboration with patient experts in advance. Clear agreements about roles, responsibilities and expectations can help prevent misunderstandings or disappointment.
• Sharing results: Patient experts value hearing how their input has contributed to the research, both during and after the project. Make sure to keep them informed about the outcomes of their involvement and the research. This demonstrates that their contribution is valued and can encourage future involvement.

These recommendations are based on an artikel van de Wit e.a. (2016) (in Dutch).

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