Why Involve the Public in Designing Research

"Research is a core part of the NHS.  Research enables the NHS to improve the current and future health of the people it serves. The NHS will do all it can to ensure that patients, from every part of England, are made aware of research that is of particular relevance to them.  The NHS is therefore putting in place procedures to ensure that patients are notified of opportunities to join in relevant ethically approved research and will be free to choose whether they wish to do so."
Handbook to the NHS Constitution, January 2009

The involvement of the public in research and development is becoming increasingly recognised as an indicator of the quality of a research proposal.

For example they can:

• Help to make sure that issues which are important to consumers, and thus the NHS, are identified. Clinicians may be experts in their field, but that does not mean they can see all the perspectives, particularly from the patient's view.
• Help to ensure that money and resources are not wasted on research that has little relevance to the NHS.
• Help to ensure that research doesn't just measure outcomes that are identified and considered important by professionals.
• Help to ensure that technologies developed are acceptable to consumers.
• Help with the recruitment of their peers.
• Enable people who are often marginalised, such as those from black and minority ethnic communities, to contribute to research.
• Disseminate the results of research and help to ensure that changes are implemented.

Useful resources:

INVOLVE website

INVOLVE has produced a Public Information Pack (PIP) which is made up of four booklets and is for members of the public who are interested in getting involved in NHS research. The booklets have been produced by INVOLVE with support and advice from members of the public to help ensure the kind of information people need when first getting involved in research is covered. The booklets are printed in colour with images and can be obtained from INVOLVE by e-mailing: pip@invo.org.uk or downloaded from their website:

• The Public Information Pack (PIP) Booklet 1 No. of pages: 34. Filesize 671 kb
• Booklet 2 Getting started No. of pages: 30. Filesize 849 kb
• Booklet 3 Finding out more No. of pages: 37. Filesize 278 kb
• Booklet 4 Jargon Buster No. of pages: 18. Filesize 258 kb

People in Research

NIHR Patient and Public Awareness

NIHR Central Commissioning Facility (NIHR CCF) Patient and public involvement