Service user and carer involvement

The involvement of service users, carers and the lay 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 an reduce this mismatch, the National Institute for Health Research requires evidence of active involvement for applications to 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’s 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 my 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

The RDS can provide you with the all the support you need to develop active involvement for your research project. You can also find more information on the INVOLVE web-site www.invo.org.uk. Involve are a national advisory group, funded through 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.

Also, support and information is available for researchers within the Devon area from Folk-us on their web-site www.folkus.org.uk. Folk-us are also funded by the NIHR.

Another useful organisation to link with is the James Lind Alliance whose focus is on the use of patient focussed outcome measures. More information can be found at www.lindalliance.org

Exploring Impact: public involvement in NHS,
public health and social care research

A new INVOLVE report was launched on November 6th 2009 by Professor Dame Sally Davies, Director General of Research and Development at the Department of Health. This report explores the impact of public involvement through an in-depth review of published literature.

The Full Report is available to download at: www.invo.org.uk/pdfs/Involve_Exploring_Impactfinal28.10.09.pdf

A 16 page summary is also available at:
www.invo.org.uk/pdfs/InvolveExploringImpactSummary3.11.09final.pdf

Research Design Services and Public Involvement - a national map.

INVOLVE have published a report detailing the public involvement work in each RDS, which they have called the RDS public involvement ‘map’. Click HERE to download the report (pdf).

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