How to involve the public in your research

We heard in the last step why Patient and Public Involvement and Engagement (PPIE) is essential in all health and social care research. Now we are going to explore the ways patients can get involved and learn about the INVOLVE National Standards for Public Involvement.

The National Institute for Health and Care Research (NIHR) define Public and Patient Involvement as “An active partnership between patients and the public and researchers in the research process, rather than the use of people as ‘subjects’ of research.”

Who are the Public?

• Users of social and health care services
• Patients
• Potential patients
• Carers
• Members of the public

But what are the differences between Involvement, Engagement and Participation?

Patients, carers, service users and the public can be involved in research in 3 different ways. People tend to think about public involvement in research in terms of being part of a vaccine or medicine trial testing out new remedies or completing questionnaires about their health.

This, however, is called ‘participation’ in research rather than involvement or engagement, when research is ‘done to them’ as a subject. Involvement is more specifically about when the public contribute by supporting the research process through a variety of different means to ensure that the researcher is considering how to ask the right question in the right way, therefore, gaining a relevant answer.

By doing this, the researcher is also seeing their research through the eyes of the patient rather than just through the eyes of a researcher.

How can we involve the public? We need to consider carefully how to do this in a way that is not tokenistic. By this, we mean ensuring that the process is fully accessible and that people are fully engaged in a meaningful way throughout the whole research cycle.

We will discuss this more fully in the next few steps.

There are 3 methods of involving the public. These are:

1. advisory/consultative
2. collaboration
3. co-production

Methods of advisory or consultative involvement include the use of focus groups, interviews and surveys.

Working collaboratively often involves service users being a member of a steering group, reviewing written material to ensure it is accessible to participants and also may assist in analysing data by viewing it through the patient or carers’ eyes.

The third way of involving patients is called co-production. This way of working is more challenging in that it means members of the public work in partnership throughout the whole research process from the design of the research question through to the dissemination of outcomes. This partnership working means that the patient or service user is more accountable and needs to commit more time to the process. The difference between collaborative research and co-productive research is that PPIE partners are equal in co-productive research as well as being involved in every stage of the cycle.

Service users can also support the research process by methods of ‘engagement’. By this we mean facilitating information more widely by sharing information with the public through means of social media, public talks or sharing out leaflets and other similar methods. This is also an important element of research as the sharing of information can result in the change in service provision or practice. It can also lead to the recruitment of volunteers to participate, engage or get involved in research.

A further important element of engagement, which is gaining more traction in research, is supporting researchers to share their outcomes more widely. For example by lobbying parliament, liaising with local politicians or working with national or local charities, local authorities or local health trusts to convince them to integrate your findings into their practice or service.

How is PPIE valuable to the volunteers themselves?

Being involved in research can provide people with a sense of value and achievement. It gives patients or service users an opportunity to give something back and help others who have similar experiences to them. It may assist people in gaining new skills and a new purpose.

How do we ensure we facilitate meaningful PPIE?

The UK have developed standards for involving the public in research. They are called the UK Standards for Public Involvement https://sites.google.com/nihr.ac.uk/pi-standards/home

There are 6 elements to the guidance, which provide a clear description of what good PPIE should look like. These are:

1. Inclusive opportunities
2. Working Together
3. Support and Learning
4. Governance
5. Communications
6. Impact

It is essential that when making your application for funding, you consider and explain how you will involve the public in your research. By adhering to these standards, you will be able to fulfil the requirements expected of you.

Further reading

https://bepartofresearch.nihr.ac.uk