Involve, the healthcare organisation that worries about user involvement in health and social care (patient involvement to healthcare people who have not imbibed the somewhat- unpleasant-and-incomprehensible-to-most-people but politically correct terminology for the people you work with) has published a review of research on involving users and patients (user of course are different from patients, because the patient’s family and carers also use your service).

It summarises a lot of useful (I originally mistyped userful and that would be appropriate too) practical information and is also a good example of how to do a literature review. Users can be involved in almost all stages of research  Increasingly, they have to be if you are going to get cooperation in being researched, as the co-badging of this report with the insignia of the NHS National Institute for Health Research shows. A lot of health researchers have not got this point yet, as a recent application to research some of our patients shows.

Only one citation from palliative care: Cotterell, P., Clarke, P., Cawdrey, D., Kapp, J., Paine,
M. & Wynn, R. (2007) Becoming involved in research: A service user research advisory group. In Creative engagement in palliative care: New perspectives on user involvement. L. Jarrett, ed.,Radcliffe Publishing, Oxford, pp. 101-115.

Staley, K. (2009)Exploring Impact: Public involvement in NHS, public health and social care research. Eastleigh: Involve.

On the web:http://www.invo.org.uk/pdfs/Involve_Exploring_Impactfinal28.10.09.pdf