Resources for the public

Involvement is where members of the public are actively involved in research projects and in research organisations.

It is where research is carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them’.

Involvement might include helping researchers identify the most important questions to ask or the most important outcomes, helping design projects that make it easy to take part, helping to make sure any written materials are easy to understand, and helping to share the results of research.

As a member of the public, a specialised knowledge of the research area is not needed in order to be involved in it. Neither are you required to be a medical expert.

You may be asked to speak about your ‘lived experience’. This might be of a condition or illness that you have, or have had. It may be of caring for someone with a condition or illness. It might also be of your experience of using treatments or services, or your view as a public member.

What is important is that as a PPI Contributor you are able to bring your own knowledge and experience to the research process, whether as a patient or from your work or personal life.

Examples of patient and public involvement include:

• 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 and expenses.

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

The NIHR has published PPI payment guidance for member of the public who are involved in research. This includes important information if you are receiving state benefits, are receiving a retirement pension or are liable for income tax and National Insurance. 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. You can chose whether or not to accept payment for involvement activities and can also ask to be paid a lower amount.

In partnership with the Oxford BRC and Applied Research Collaboration Oxford and Thames Valley, we are hosting a series of PPI webinars. You can watch a recording of the webinars on the links below:

• A philosopher’s approach to equality in patient and public involvement (May 2021)
• Introduction to statistics in health and medical research (March 2021)
• Finding and Reading a Research Paper (December 2020)
• Qualitative Research (November 2020)
• Health Economics and PPI (June 2020)

We partner with local health and research organisations to deliver a range of PPI related training. Current training includes:

• The Research Cycle PPI Workshops and Webinars: 

Each workshop and webinar covers a research-related topic, and discusses ways in which patients and members of the public can get involved. All events are free to attend  and take place in Oxford or online.

Visit our events pages for details of future workshops and webinars.

• Below are links to online PPI learning and development resources:

Learning for Involvement: A website dedicated to learning and development for public involvement in research, hosted by the National Institute for Health Reearch. It brings public involvement resources and training together in one place.

Public Reviewing with the National Institute for Health Research: An interactive course for PPI contributors who are providing feedback on a research document.

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 .
• The NIHR Learning for Involvement website provides resources  for the public including an introduction to public involvement and guide to being a public co-applicant.  They offer information about payments and a Benefits Advice Service for people considering accepting reimbursement for their time in being involved.
• The UK Standards for Public Involvement are designed to improve the quality and consistency of public involvement in research,
• Involvement Matters is a monthly bulletin of opportunities, training, events and information for the public to get involved in research, commissioning or health service provision in the Thames Valley area.
• 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.
• The McPin Foundation offers a range of opportunities to get involved. You can sign up for their Involvement Bulletin here.
• The Cochrane Review Ecosystem infographic which provides a comprehensive overview of the entire life cycle of a Cochrane Review, including all the people, processes, and systems involved.
• Following our workshop on PPI and Digtal Health (January 2020), the Bristol Health Partners and People in Health West of England have created a factsheet with an overview to key concepts and links to information on digital health. Oxford Digital Health factsheet

If you come across any other resources that you think would be helpful to others, do please send the link to involvement@psych.ox.ac.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.