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What is patient and public involvement?

There are different approaches to patient and public involvement (PPI) in research.

The term 'public involvement' is defined by INVOLVE (a national advisory group that supports greater public involvement in NHS, public health and social care research) as follows:

'Research being carried out "with" or "by" members of the public rather than "to", "about" or "for" them.'

The same organisation defines ‘public’ as follows:

'Includes patients, potential patients, carers and people who use health and social care services as well as people from organisations that represent people who use services.'

There is an important distinction between the perspectives of the public and those of people who have a professional role in health and social care services.

User involvement is the creation of a partnership between users and researchers to try to make the research process more effective.

Involving patients and the public in medical research (National Institute for Health Research)

What public involvement is not

The term ‘public involvement’ can be misinterpreted. 

INVOLVE highlight that it is not participation (where people take part in a research study) and it is not engagement (where information and knowledge about research is provided and disseminated).

Involvement at different stages of the research cycle

There are benefits to PPI from the start of the research cycle, identifying and prioritising research through to evaluation of impact.

For further information and examples of PPI in the different stages of the research cycle, see:

INVOLVE briefing note 8: Ways that people can be involved in the different stages of the research cycle

INVOLVE briefing note 8

NIHR Research Design Service for the North West: Patient and Public Involvement how-to guide

Patient and Public Involvement how-to guide

Approaches to involving patients and the public

There are three different approaches to patient and public involvement in research

  • Consultation

Members of the public are asked for their views, and their opinions inform decision making

  • Collaboration

There is an ongoing partnership between researchers and members of the public, and decisions about the research are shared

  • User controlled

The research is actively controlled, directed and managed by service users and their service user organisations

In practice, research projects will often use a combination of these approaches during different stages of the project cycle. Further information can be found on the INVOLVE website.

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