Research led by service users
Public involvement in research is increasingly encouraged by funders. It needs to be done well, however, and it does raise specific ethics considerations.
Service users can be involved in research in a variety of ways - for example, as researchers themselves, or in advising professional researchers on their work (for example, as part of a project steering group). If your research is concerned with service users of any kind, you should consider whether - and how - you might involve them, or be guided by them, in your work.
A detailed discussion of service user involvement is beyond the scope of this website, and we would recommend you look at the INVOLVE website if you are interested in this area. INVOLVE is a national advisory body for the NHS that supports and promotes active public involvement in NHS, public health and social care research.
If you are thinking of actively involving service users or other members of the general public in leading or advising on your research in some way, you might consider the following questions:
- How do you plan to involve these people? Are you expecting them to fit within a professional model of expertise? Will you accommodate and respect the personal expertise that they bring? For example, if your service users have low levels of formal education, or have been out of education for a long time, will they feel comfortable about speaking up in a group of expert professionals (e.g. academics or service managers)?
- What kind of training, coaching, support and supervision do you need to provide? Have you got the time and budget for this support within your planned research?
- What is the likely sensitivity of the experiences and expertise that they will bring? For example, if they are advising you on a project, have you thought about issues of confidentiality, if your service user experts want to speak from their own personal experience?
- If your service users are carrying out research themselves, have you taken their feelings and safety into account? INVOLVE (2009) advises that they may find that talking to other people reminds them of their own negative experiences.
- Equally, you need to consider the well-being and safety of the participants in your research. Do your service user researchers understand the ethics protocols that the study is following - for example, in relation to confidentiality?
- There may also be particular ethics tensions if your researchers live in the local area that you are studying - inherent in their dual role, as a researcher and a member of the local community. See our section on practitioner research and dual roles for a discussion of relevant issues.