Why involve patients and the public in research?

Involving patients and members of the public in research is an increasingly important part of the strategic direction for a range of organisations, and in the health research field this includes the Department of Health, medical health charities and academic units.

The NHS Research Governance Framework, 2005, states that the development of a quality research culture should involve the active involvement of service users and carers. However it is acknowledged that genuine patient and public involvement (PPI) in research (as opposed to tokenism) can be challenging, so why do it?

From past experiences, and the accumulation of evidence that is being more widely promoted, the following reasons are put forward to not only support PPI, but to demonstrate the benefits:

• People who use research-based/medical health services are able to offer different perspectives
• These differing perspectives can help to ensure the prioritisation of research issues important to them and therefore to health care services as a whole
• This in turn can help to ensure that money and resources are not wasted on research that has little or no relevance
• Once specific research issues have been prioritised, PPI can assist in the identification of more relevant outcome measures, rather than the use of those considered important by healthcare professionals
• Effective PPI can enthuse those involved to assist with the recruitment of their peers to participate in research, including those who are often marginalised
• Similarly, enthusiastic involvement can ensure effective dissemination of research results to a wider audience of relevant patient/public organisations
• The promotion of successful research outcomes can in turn help to ensure that changes are implemented, benefiting all involved

Following the Department of Health publication of  The NHS Plan in 2000 which describes the vision of 'a health service designed around the patient', Section 11 of the Health and Social Care Act 2001 was implemented, placing a duty on NHS trusts, Primary Care Trusts and Strategic Health Authorities, to “make arrangements to involve and consult patients and the public in service planning and operation, and in the development of proposals for changes”.

In line with this Act, guidance was issued, and since then, a number of Department of Health publications have been produced, demonstrating a commitment to PPI, including:

• The NHS Improvement Plan: Putting People at the Heart of Public Services (2004)
• Research Governance Framework for Health and Social Care (Second edition, 2005) – which states 'relevant service users and carers or their representative groups should be involved wherever possible in the design, conduct, analysis and reporting of research'
• Patient and public involvement in health: The evidence for policy implementation (2004) – which states 'the involvement of patients, carers and the public in health decision-making is at the heart of the modernisation of the NHS', and it makes the case for greater involvement of the public in the health arena
• Best Research for Best Health: A new national health research strategy (2006) – which states 'an aim to create a health research system in which the NHS supports outstanding individuals, working in world-class facilities, conducting leading-edge research, focused on the needs of patient and the public'.

In line with the above (and more) publications, the development of Patient Advice and Liaison Services (PALS) and PPI Forums in NHS/Primary Care Trusts demonstrates that the Department of Health is increasingly putting patients at the centre of everything it does.

The establishment of a national advisory group, INVOLVE, further demonstrates this. This group promotes public involvement in research, in order to improve the way that research is prioritised, commissioned, undertaken, communicated and used. There is an increasing body of evidence for the benefits of PPI in research and health care, and done well, PPI can help empower those involved at all levels.