Patient and Public Involvement

Getting involved in research activities

Many patients and public members work with researcher professionals and clinicians (e.g. doctors, nurses) and get actively involved in the different stages of research and associated activities.

Active involvement in clinical research is very different from being a participant in a study. It means:

• Research done with members of the public, not to, about or for them
• Getting involved in the research process or activity itself
• Making sure that clinical research is relevant, useful and to the benefit of the public.

There are a range of activities that patients and public members may be able to get involved in, with opportunity to choose what interests them. Examples include:

• Helping to identify research that is important and relevant
• Helping to choose important topics for research
• Helping to develop patient information leaflets
• Helping to support a research project or advisory group as a member
• Helping to develop accessible information and research news
• Helping to support and promote good research

Getting actively involved can lead to:

• More relevant research questions being asked resulting in more useful research
• More sensitive approaches to people who take part in studies as ‘participants’
• Helping to keep the research on track
• Greater opportunities to share research news with patients and the public.

Patients and the public may benefit from being actively involved:

• By having a say in research
• Through sharing their experience
• By getting research started that is important to them
• By learning more about research activities
• Through meeting new people – researchers, members of the public and other people from different networks
• By gaining confidence and new skills
• By having the chance to make a contribution.

Patients and the public may get paid for their involvement depending on what they are doing. Sometimes getting involved is unpaid. This information will always be made clear at the beginning of involvement. Any expenses you incur will always be reimbursed.

You may be interested in the following publications prepared by the National Institute of Health Research (NIHR):