We exist to improve the lives
of everyone affected by epilepsy

Patient and public involvement in research

Epilepsy Action is committed to involving people with epilepsy and the public in epilepsy research.

  • What is patient and public involvement in research?
  • Why is patient and public involvement in research important?
  • How does Epilepsy Action help people with epilepsy and the public get involved in research?
  • What are the benefits of PPI for researchers?
  • What are the benefits of PPI for people with epilepsy?
  • How can I find out more about patient and public involvement in research?

What is patient and public involvement in research?

Patient and public involvement (PPI) enables people with a health condition, their family members, carers and friends to get involved in the research process.

The research process includes:

  • Identifying and prioritising research
  • Designing research projects
  • Collecting and analysing information
  • Dissemination (sharing the results of the research with all interested parties)

A good description of PPI is, ‘research carried out with or by service users, rather than to or about them’.

Why is patient and public involvement in epilepsy research important?

It can help to:

  • Identify what research is important and relevant to people with epilepsy
  • Influence the way research is planned and carried out
  • Improve the experience for people taking part in the research (for example, making sure that researchers ask the right questions and in a way that the public understand)
  • Make sure the research remains focused on the needs of people with epilepsy
  • Make it more likely that people find out about the research

How does Epilepsy Action help people with epilepsy and the public get involved in research?

We have wide experience and acknowledged expertise in facilitating PPI. For example, we have a network of research volunteers (EARNs) who can:

  • Offer advice as members of a project steering group
  • Work with researchers to plan and design their projects
  • Comment on and develop research materials, such as leaflets or questionnaires
  • Take part in a research project, for example by completing a questionnaire or participating in a focus group
  • Share the findings from research with everyone who might be interested

Find out more about how to access our research volunteers

We also advertise research projects to people with epilepsy, their carers and anyone else who might be interested.

Find out more about research projects to take part in

What are the benefits of PPI for researchers?

  • Keeps your feet on the floor
  • Reminds you why you are doing your work
  • Provides focus to your work
  • Helps you to explain your work
  • Spurs you on when it feels challenging

PPI is also important for researchers, because most research funding bodies now require researchers to show how:

  • They have involved service users in developing their proposals and
  • How they will be consulted during the life of the study

What are the benefits of PPI for patients?

  • Increases knowledge of own condition
  • Develops skills
  • Improves shared decision making with healthcare professionals
  • Builds confidence and self-esteem
  • Helps understand the meaning and importance of research

How can I find out more about patient and public involvement in research?

National Institute for Health Research
NIHR's mission is to provide a health research system in which the NHS supports outstanding individuals to:

  • Work in world-class facilities and
  • Conduct leading-edge research, focused on the needs of patients and the public.

INVOLVE
An organisation that is part of, and funded by, the National Institute for Health Research. They support active public involvement in NHS, public health and social care research.

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