Service user and carer involvement

The involvement of service users, carers and the public in the business of the NHS has been actively encouraged through a number of policy routes; including the NHS Plan, 2000, DH Research Governance Framework for Health and Social Care 2001 and the Health and Social Care Act 2001.

More recently, the NHS Act 2006 created an obligation on NHS organisations to consult with the public when they develop or commission services. This being the case, it makes some sense then, that the research information that is used to inform services should also include the views of service users, carers and the public from the outset.

Scadding (2006) highlighted the issue:

“there are mismatches between what researchers are researching and unanswered questions asked by patients and clinicians. Firstly, there are mismatches between what researchers are researching and unanswered questions asked by patients and clinicians; linked with this, there are mismatches between treatment outcomes studied by researchers and those regarded as important by patients. Doctors’ and patients’ priorities are not necessarily the same…”

To try and reduce this mismatch, the NIHR requires evidence of active involvement for applications to a number of their funding streams. But what is active involvement?

Active involvement in research

Active involvement in research is different from simply taking part in a study. It means:

• Doing research with service users and carers as part of your project team and members of your steering group. It’s not just about doing research to them or about them.
• That service users, carers and members are involved in the design of studies, development of protocols and the collection of data, in fact any part of the whole the research process.

What is the added value of involving service users and carers?

Service users tend to see the world of health care from a particular perspective and therefore need to be able to say what’s important to them. On the whole their contributions are valuable, giving alternative views from the usual NHS staff perspective with often more than average enthusiasm and single minded-ness.

They are able to make judgments based on their understanding of their condition and may have different aspirations and thoughts about health outcomes that may otherwise not be considered. They can help researchers to make sure that publicly funded health and social care research is relevant and useful to the public.

So how could involving service users or carers benefit your research?

They can help you to:

• make sure that you ask the right questions in a way that benefits people who use services
• keep the research on track so that it stays relevant
• make sure the people being researched are approached in the right way
• improve the quality of the research by adding another point of view to the design and conduct

We can provide you with the all the support you need to develop active involvement for your research project. Simply contact your local RDS Office, or you can contact our Public Involvement Lead, Jo Welsman on J.R.Welsman2@exeter.ac.uk or 07342 025 831.

You can find more information in our brief guide to public involvement in funding applications and also on the INVOLVE website. INVOLVE are a national advisory group, funded through the NIHR. Its role is to support and promote active public involvement in NHS, public health and social care research.

Another useful organisation to link with is the James Lind Alliance whose focus is on the use of patient focussed outcome measures.