A clear policy on honorariums and reimbursement of expenses for patient, family and public members has to be in place before asking them to be involved in your PPIE initiative. A written policy provides transparency and sets clear expectations for potential members. An example policy, created based on guidance from the National Institute of Health and Care Research (NIHR) and feedback from our patient and public partners, can be found in Appendix H.
Honoraria
Honorarium payments are sometimes made to acknowledge the time and contributions made by patient, family and public members to the PPIE initiative.
For example, honoraria may be given based on the time spent preparing and attending PPIE-related activities or based on the nature of the task or activity. The payment rate may be based on your judgment, local practices and, ideally, input from your patient members as there are often no nationally recommended payment rates in many countries.
Expenses
Patient, family and public members should not incur any out-of-pocket expenses in order to contribute to the PPIE initiative. Travel to PPIE activities, meals and refreshments during meetings, as well as accommodation and subsistence for out of town visits should be reimbursed. Additional expenses should also be considered depending on the circumstances of the members. For example, childcare costs should be covered for parents of young children while costs incurred by a family member for arranging a carer for an elderly relative while they attend a meeting should be reimbursed. Accessibility needs of members should also be considered.
Payments
The policy should outline how to claim expenses, when to expect honoraria and reimbursements, and how funds are received (i.e. cash, cheque, transfer). It is sensible to make the payment process as easy as possible for members. For example, instead of requiring receipts or other proof of payment for local travel, all members could be provided with a flat rate that is sufficient to reasonably cover return travel in a 10km radius. Electronic bank transfers may also be preferred by group members, as this avoids the need to physically go to a bank to deposit cheques.
Alternative methods of payment or recognition, such as vouchers or gift cards, are commonly used in high-income countries.
Taxation
Receipt of honoraria may have tax implications for the recipients. It is best to liaise with your institutional legal and finance teams about the appropriate tax procedures for making payments to members and advice to give to members in case they have any additional tax responsibilities.