Public Involvement in Health Research

Public involvement in research includes:

• Being able to ensure that important issues are identified and provide a patient-perspective on care and research.
• Making the language and content of information provided more appropriate and accessible (for example in questionnaires, and patient/participant information leaflets for clinical trials).
• Helping to ensure that the methods proposed for the study are acceptable and sensitive to the situations of potential research participants.
• Helping to ensure that research uses outcomes that are important to the public.
• Encouraging and supporting patients to participate in research by – making the research more appropriate and acceptable to potential participants – improving the information provided so people can make informed choices – helping to include seldom heard groups. 
• Suggesting ideas for new research areas.
• Ensuring research is focused on the public’s interests and concerns and that money and resources are used efficiently.
• Helping to reshape and clarify the research. 
• Ensuring that new technologies are acceptable to the public. 
• Disseminating results of research and supporting the implementation of research outcomes for patient benefit.
• Ensuring that the changes are implemented. 

Useful Information and Links

INVOLVE is a national advisory group, funded by the National Institute for Health Research (NIHR). Its role is to support and promote active public involvement in NHS, public health and social care research. INVOLVE can provide more information on helping in research and have produced a Public Information Pack (PIP) comprising of 4 booklets, for members of the public interested in becoming involved in research. For more information, visit the Invo website.

People in Research aims to help members of the public make contact with organisations which want actively to involve people in clinical research.

UK Clinical Research Collaboration  website gives information on public involvement in research and booklets can be downloaded giving further information. For more information, visit the Clinical Research Collaboration website 

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