Public involvement in research

What is public involvement in research?

Everyone benefits from research. This not only includes scientific research in laboratories but also research into health and social care. Research provides evidence about what works best. 

Patients, carers, people who use social care services and health and social care professionals all use this evidence to make decisions about treatments and care.

When the public gets involved in research, they work alongside researchers to help shape:

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

Being involved is not the same as taking part in a trial or study to test a new treatment or care option. It’s about being a member of the research team that works together to design and run the study.

We define public involvement in research as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.

When we use the term ‘public’, we are including:

• patients and potential patients
• carers and people who use health and social care services 
• people from organisations that represent people who use services

Why is public involvement important?

By getting involved in research, you can help make research more relevant and useful to patients, carers and the public. By working with researchers, you will improve research and make a difference to the way health and social care is provided in the future. 

By getting involved in research, you can help make research more relevant and useful to patients, carers and the public. By working with researchers, you will improve research and make a difference to the way health and social care is provided in the future.

What can I contribute to research?

Your knowledge from having experienced care, or the care of others, is of great value to researchers. 

Researchers may have textbook knowledge about different conditions but unless they have also lived through it, there will be gaps in their understanding.

You won’t be expected to have technical knowledge of how research works. The knowledge you have as a patient, carer or member of the public is what’s unique about your contribution.

What difference will I make?

You can make a difference at any and every stage of research. Your contributions can help shape the thinking behind the planning and delivery of a research project. 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.

Why do researchers want to involve the public in their research?

Most researchers are aware of the benefits of involvement and therefore want to do it well. They want to learn from their conversations with diverse people and communities. They will often make changes to their ideas and plans as a result.

Researchers have an added incentive to involve people in their work. When they apply for funding, they are often asked how they have involved people and communities in developing their proposal, and how they will involve them in carrying out the research.

The UK Standards for Public Involvement provide a framework for researchers, showing them what good involvement looks like.

Why do people decide to get involved in research?

People have different reasons for wanting to get involved in research. Some people have had a difficult experience and appreciate being able to do something positive with it. Others have had very good experiences, and see their involvement as an opportunity to ‘give something back’.

For most people, it’s about wanting to make a difference – so that in the future, care will be better for the people who come after them.