Involvement is where members of the public are actively involved in research projects and in research organisations. INVOLVE defines public involvement in research as ‘research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them’.

Examples of patient and public involvement are:

• Patient, carer or public as co-applicant on a research project
• Collaborating with researchers to identify research priorities
• As members of a project advisory or steering group
• Co-producing consent forms or patient information
• Ensuring research methods are appropriate for target participants
• Jointly presenting research findings with researchers

If you are a patient, carer or member of the public who works with us on the design and planning of research, or in a strategic advisory role, you are entitled to receive payment for your time.

We have developed a Payment Policy in keeping with INVOLVE guidance and in line with other local policies. You can download the Payment Policy for the Public.

Whether you are currently involved with research, or are interested in getting involved, you might find the following of interest:

• The National Institute of Health Research (NIHR) website holds a wealth of information about their work. You can register to receive their various Newsletters (including one on PPI), learn more about their structure (including Biomedical Research Centres)  and find out more about PPI .
• INVOLVE is the NIHR national advisory group for PPI and offers a range of information and resources for both the public and researchers. They have produced a Public Information Pack on how to get involved in research. They offer information about payments and a Benefits Advice Service for people considering accepting reimbursement for their time in being involved.
• The NIHR is working to improve the quality and consistency of PPI in research through the development of national standards – you can read more about this here.
• The NIHR Collaboration for Leadership in Applied Health Research and Care, Oxford, has information available and this is where you can also sign up to the “Involvement Matters” bulletin that is sent out across the Thames Valley.
• There are various blogs that you might find interesting, for example Simon Denegri’s Lay Review, Kristina Staley’s writings, the Patient Perspectives in the BMJOpinion, simonstones.com/, derek-online.blogspot.co.uk/, whichmeamitoday.wordpress.com/.
• The James Lind Alliance sends out seasonal Newsletters with updates about various Priority Setting Partnerships – you can sign up here.
• You may find opportunities for involvement via the local NIHR Clinical Research Network, or the NIHR Oxford Biomedical Research Centre.
• There’s a great new online opportunity to learn more about improving healthcare through clinical research which starts on November 6^th. To see more information and/or register see here.
• The McPin Foundation offers a range of opportunities to get involved. You can sign up for their Involvement Bulletin here.
• We have developed a Payment Policy in keeping with INVOLVE guidance and in line with other local policies – you can download the Policy for the Public.

If you come across any other resources that you think would be helpful to others, do please send the link to our PPI Manager, Claire.Murray@oxfordhealth.nhs.uk and we will do our best to include them. Please also let us know if you find that any of the links have stopped working.