Public involvement for researchers

The importance of public involvement in health research

Public involvement is a key component of the NHS. You will find that others use different terms such as patient and public involvement (PPI), service user involvement, lay involvement or consumer involvement. The views and opinions of local people, in terms of public involvement in health research, informs decision making in the NHS and helps to balance clinically driven concerns.

Evidence of carefully considered and active, ongoing patient involvement is a key aspect to obtaining research funding from a number of National Institute for Health Research (NIHR) funding streams.

It is essential that partnerships are formed as early as possible with patients, carers and the public to help you develop the most effective involvement plan for your research project.

The NIHR expects to see detailed evidence of active public involvement embedded throughout applications in order to obtain a successful outcome.  This includes a detailed and realistic budget to support the involvement, for help with this please see the NIHR INVOLVE cost calculator.

The benefits

Involving the public helps you to:

  •  improve the quality of the research by adding another dimension
  •  ensure questions are relevant and timely
  •  assist in the dissemination of the findings to a wider lay audience
  •  obtain external funding.

Demonstrable public involvement is an increasingly important element upon which NIHR research proposals are assessed.

Who are ‘the public’?

When talking about ‘the public’, the NIHR includes:

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

Whilst all of us are actual, former or indeed potential users of health and social care services, there is an important distinction to be made between the perspectives of the public and the perspectives of people who have a professional role in health and social care services and research.

For a more detailed explanation of public involvement, how it links to and differs from engagement and participation in research see what is public involvement in research?

Adding value

People who use health and social care services have a wealth of experience and unique understanding which makes their input invaluable. They can provide a fresh outlook and alternative steer and thus ensure that the research remains useful to all involved.

A strategy to do this must be clearly thought through and ideally designed in conjunction with service users. The time required to foster successful and meaningful involvement should not be underestimated.  To find examples of patient and public involvement in over 200 hundred current and completed research projects, please visit the NIHR INVOLVE library of research projects.

What is classed as ‘active involvement’?

‘Active involvement’ is a partnership between the public and researchers in the research process, rather that the use of people as ‘subjects’ of research.

Involvement in research includes either a general lay perspective or a more experiential view based upon direct use of specific services.

Active involvement is not simply participation in a study, it covers aspects such as:

  • The involvement of service users, carers and members of the public in study design, development of protocols and data collection
  • The inclusion of service users, carers and members of the public in steering groups and project teams.

For further information, please see briefing note 2 page 6 of NIHR INVOLVE Briefing notes for researchers.

The RDS East of England Public Involvement Fund

We offer a small public involvement fund to support pre-award public involvement activities (where alternative sources of funding are not available). Please enquire about the Fund from Tracey Johns, Public Involvement Lead.