The term ‘user’ refers to patients, their carers and family members, as well as to members of the public and representatives from patient and charitable organisations. User involvement is also referred to a Patient and Public Involvement (PPI).
User contributions are valuable at all stage of a research lifecycle (from initial idea, designing patient information sheets, planning recruitment strategies through to dissemination of results), they provide an alternative view from those of the research team. Users will make observations and recommendations based on their lived experience and understanding of a condition and may have different thoughts about what is important in regards to the research outcomes that researchers have not considered. In some studies it may also be appropriate for users to become members of the research team and to carry out specific research duties such as interviews or assessments (as delegated by the Principal Investigator). The user would then be referred to as Peer Researcher (a person with lived experience of the issue being studied AND a member of the research team).
Involving users in your research design and development will make a difference to the success of your project and reassure the Research Ethics Committee (REC) that the research respects the rights, safety and dignity of participants. Increasingly funders of research require PPI as a condition of funding.
- Getting users involved
Patient and Public Involvement (PPI) is an integral component of the advice given to those approaching Research Design Service London (RDS London). Support is given on an individual level, ensuring that researchers adopt good PPI practice that is relevant and aligned with the expectation of funding bodies. RDS London also has on-line resources available and runs workshops. Although PPI can be incorporated at different stages of the process it is generally best to develop links with potential PPI collaborators at the earliest stages of the project. RDS London has an Enabling Involvement Fund available to researchers applying for funding. The fund is intended to get patients and the public involved in research at an early stage (i.e before grant submission) where they can be influential and have positive impacts.
INVOLVE is part of, and funded by, the National Institute for Health Research. It seeks to maximise opportunities for public involvement in research and to ensure that researchers, research commissioners, research funders and the public have access to the support and guidance that they need.
Members of the public that want to get involved in research can find out what opportunities there are through the People in Research database of opportunities. You can scroll through all the opportunities or sort your results by topic, type of involvement or location using the drop-down menus. Likewise researchers who want to get people involved can post opportunities on the database.