What is Patient and Public Involvement (PPI)?

The NIHR (National Institute for Health and Care Research) describes PPI in research as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. PPI is an active partnership between members of the public and health and social care researchers. This means that members of the public work alongside a research team to help shape:

• what research gets done
• how it’s carried out
• and how the results are shared and applied in practice.

What is health and social care research?

Health and social care research helps health care professionals – such as doctors, nurses or care workers – find out about the best available treatments to help the people they are caring for. But it’s not just about treatments, research can also help in other ways. For example, research could:

• Find new and better ways of preventing, diagnosing and treating diseases or conditions
• Test new approaches that could improve the lives of people receiving health or social care
• Look at the costs and benefits of making changes in the community, for example, introducing exercise programmes or screening for cancer in certain age groups and
• Help us understand how the NHS and social care services can spend money and run more efficiently.

Why is PPI in health and social care research important?

Researchers and clinicians may not have first-hand experience of the health condition or service that they wish to research. Your knowledge and experience can provide researchers with insights into what it is like to live with a particular health condition or to use a particular health and social care service, helping to broaden their understanding. This can help to make the research more relevant to the needs of patients, carers and service users, and make a difference to the way health and social care is provided in the future.

In addition, your voice can influence people beyond the research team, including the people who take part in the research and the people who use the results.

Sometimes the involvement of patients, carers and members of the public determines whether a project gets funded, whether it runs successfully and whether the results change practice.

What does joining our PPI group - the Participate Network - involve?

You can get involved as little or as much as you want to. You won’t be expected to have technical knowledge of how research works, just an interest in health and social care and a willingness to share your experiences and views.

You may be asked to comment on research studies by email, or invited to attend meetings at the University. Meetings usually involve a researcher presenting their research study to the group and the group then giving their views on the study.

You may be invited to be an advisor or co-researcher on a study, which means you will be involved in every stage of the research study - from deciding the research question, to designing how the study will be carried out, and finally helping to share the results.

Why join the Participate Network?

There are many benefits to joining the Participate Network. Here are just a few:

• Being involved in research can give you a renewed sense of purpose, from being able to use your experience and knowledge to improve research and help make the future better for others.

• It can provide you with new knowledge, from learning about how research works, what researchers are really like, and hearing about the latest research on different conditions.

• It can help you to develop new skills through training opportunities and can build on existing skills.

• It can help to increase your confidence, and with this increased confidence you may feel you want to get involved in more varied and extensive ways.

• It can provide the opportunity to make many new friends, who may become a much-valued source of support.

• Talking about your health condition or the health condition of someone you care for with researchers can sometimes provide different ways to cope.

• You may feel valued being able to talk to someone who is genuinely interested in your health condition, making something positive of what may have been a bad experience.