On 5th April 2021, NIHR launched a new guide for patients, carers and members of the public thinking about getting actively involved in research. It offers answers to some frequently asked questions and suggests where you might get advice about your particular circumstances. You can view the guidance here.
The guide does not attempt to answer all of the questions you might have about being offered expenses or payment for involvement; it is a complex area and it would be difficult to cover everyone’s individual circumstances. We strongly advise you to get expert advice about your own personal financial circumstances before accepting payment for involvement in research.
The National Institute for Health Research (NIHR) has developed a separate guidance document aimed at researchers and professionals, which you might also want to view to learn more about how your involvement in research is costed.
- it is good practice for an organisation to cover any expenses you incur as a result of your involvement and to offer you a payment – you should not be left out of pocket as a result of becoming actively involved in research
- the organisation offering involvement should provide you with clear written information about the nature of the involvement, the duration and frequency of involvement, the amount they are offering you and what expenses they will cover
- if you are receiving state benefits, receiving any form of payment may affect your benefit claim, and therefore it is vital that you also get expert advice from a benefits advisor regarding your personal circumstances
- it is your choice whether or not you accept payment for involvement in research
- receiving payment of a fee for involvement is likely to have implications for you if you are currently employed, unemployed, receiving state benefits or retired – this is because the payment you receive will be treated as earnings