Involving the public

Why involve the public?

"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.

There are a number of resources for researchers about how to involve the public in their studies:

• NIHR Patient and Public involvement web pages.
• Patient and public involvement: information for researchers from the NIHR Central Commissioning Facility which assesses the public involvement aspect of proposals submitted to its commissioning panels.
• The TwoCan Associates/AMRC route map for user involvement in research.  Each 'station' on the map represents a stage of research management and offers guidance on how to involve service users at this stage, lessons from other organisations and links to useful resources.
• Involving the public in NHS, public health and social care research: briefing notes for researchers - INVOLVE publication
• Good practice in active public involvement in research - INVOLVE publication.
• Senior investigators and public involvement - INVOLVE publication.
• Payment for involvement - a guide produced by INVOLVE on payment to the public involved in research.
• People in Research website