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Why should patients and the public engage with and be involved in research?

There are a variety of definitions for patient and public engagement and involvement out there. But put simply, engagement describes activities where staff from an organisation, such as a university, and the public interact and connect with each other, often for mutual benefit. These activities might include researchers having a stall at a science fair, providing an opportunity for the public to talk with the researchers and find out more about the work. The intention is to break down barriers between organisations and the public. Involvement is a type of engagement and refers to the active contribution of patients and public members to research, where they can use their personal, lived experience to help shape the design and delivery of the research. 

But why should organisations engage with patients and public?

  1. To help raise public awareness for and build interest in a research topic or project.
  2. It better connects their work with wider society. For example, a public presentation on a piece of research that led to the development of a lifesaving treatment can help demonstrate that an organisation is of value.
  3. We have, thankfully, moved away from people being passive recipients of care or a service. There is an expectation now that organisations should be responsive to people as consumers and sometimes accountable to them as citizens.
  4. Breaking down barriers and developing relationships can help organisations build confidence and trust with the public, as well as with research and its outcomes. Trust is the glue that binds us together. There is little point, for example, in developing a treatment for an illness or disease if people do not trust the science behind it and refuse to take it!
  5. The development of these relationships can help smooth the path to involving the public in research. The researchers and public now know and trust each other.

And why should patients and public be involved in research?

Surely, we should leave research to the ‘experts’ – researchers and clinicians? Well, no. There are various reasons for involving patients and the public in research:

  1. Patients and the public can improve the relevance of the research. They know what issues are important to them. They bring their lived experience of a particular disease, illness, health condition or service to a research project. This experience can help identify the key issues to be researched.
  2. Patients and the public can improve the quality of the research at all stages of the research. They can help researchers to recruit participants into the research project ensuring recruitment materials are not full of jargon. They can help shape, for example, questionnaires and interview questions so that they can be understood by and are appropriate for the audience. And patients and public can also be included in interpreting findings, perhaps adding a nuance to and different understanding of the data collected.
  3. Patients and the public have the right to be involved in the research that impacts upon them. They usually pay for research, either as taxpayers or as future consumers of a drug, device or service.
  4. Involving the public is now a requirement for many research funders in the UK.

So, what motivates patients and public members to get involved in research?

There could be various reasons for patients and public getting involved in research. Here are three common ones:

  1. Often people get involved with research because they want to improve a situation, such as a product or service, for people in the future. Sometimes it is the experience – either positive or negative – of a product or service that is the motivation for people to get involved.
  2. Working on a research project can often lead to the development of new skills for those who are involved. For example, public speaking, chairing meetings, research skills and increased confidence. Sometimes these skills and confidence can open up opportunities for future work.
  3. Some people may want to get involved as they are interested in hearing more about health and social care research or want to know more about research more generally.

Let us know in the comments about why you are getting involved in research, or why you are involving patients and the public in your work.

Do you want to find out more about patient and public involvement and engagement? 

In our new, upcoming course ‘Nothing about us without us,’ you can learn about what makes good patient and public involvement and engagement in health and social care research. Register your interest for the course via this form or follow us on social media to hear news about the course and its release.