Should patients be paid for their involvement?

The contribution of patients should always be recognised. In some cases, this may be a simple verbal ‘Thank You’ or a letter after taking part in a patient involvement initiative. Sometimes, support and training may be made available. At the end of a project, patients should receive feedback and details of any improvements or outcomes resulting from their involvement.

Many patients are happy to volunteer their time and want to ‘give back’ to their local hospital or renal unit. However, financial barriers often prevent patients getting involved. No patient should be out of pocket because of their involvement and reasonable expenses should always be paid.

When patients are involved more ‘formally’, for example as advisors or co-applicants in a project, payment can be offered to recognise the level of input of skills, experience or expertise. Out of pocket expenses should also be paid.

The process for paying a patient for their time and expenses should be discussed at the start of any project. Health professionals and researchers should always include a budget from the beginning.

Read the NIHR Guide to the Payment of Fees and Expenses to members of the public for their contribution to research.

Use the INVOLVE Budget Cost Calculator for patient involvement.

Cancer Research UK has budgeting guidance (including suggested reimbursement amounts)

Download the Canadian Centre for Health Care Education budgeting spreadsheet (in Canadian dollars but can be easily changed to GBP)