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The University of Southampton
Macmillan Survivorship Research Group

Impact of service user involvement study

Identifying the impact of service user involvement on the lives of people affected by cancer


Service user involvement has been advancing in the area of cancer and palliative care services and research, but there has been very little attention paid to the effect involvement has on those service users who become involved. By service user we mean people affected by cancer or other advanced non-cancer condition, including patients, carers and patients' representatives.

What has been researched so far has been more about the impact of involvement on services. This is important but it has told us little about the impact of being involved on service users themselves.

In this study, funded by Macmillan Cancer Support, we intended to find the key factors:

We wanted to find out more about the experience of service user involvement in the settings of cancer services, palliative care and research in these areas, and we wanted to hear from service users' directly.


The study completed in July 2008 and the research report will be available early in 2009. We have presented an overview and key findings of the project at the INVOLVE conference in November 2008. We will produce a range of papers for different audiences in 2009 and plan to hold a dissemination event in 2009.

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