Identifying the Impact of Service User Involvement on the
Lives of People Affected by Cancer
Phil Cotterell, University of Southampton.
Email: P.Cotterell@soton.ac.uk
Summary
This study was funded by the 2006 User-Led grants scheme. It examined motivations
among people living with cancer for user involvement and explored how service user
involvement affects people living with cancer.
Background
Sixty four participants were involved in the study. These participants were individuals or
groups already engaged in user involvement. The research was conducted mainly through
focus groups with some telephone interviews. Research questions explored motivations for
user involvement, benefits and challenges arising from involvement and key factors that
impacted on the involvement experience.
Key Findings
Some of the key findings of the research were:
 Reasons for service user involvement were complex and included having received good
cancer care and wishing to give something back, having had negative experiences of
cancer care and wishing to improve things; and as part of a strategy for surviving cancer.

Involvement played an important part for service users in striking a balance between
living with cancer and living a full life. Involvement facilitated survival by focusing
attention on a positive and productive area.

Many service users were disappointed that their involvement had not been what they
had hoped. However, contact with others led to improvements in confidence, selfesteem and a more positive outlook.

Problems of user involvement included managing fatigue and financial problems in
funding user involvement activity.

Some service users felt they were treated stereotypically by professional researchers
and clinicians. A further problem was lack of clarity about their role for involvement.
Why is this work important?
User involvement in health and social care has become a key policy driver in the UK in
recent years. The underlying rationale is to ensure that services are patient-centred and
take account of patients’ views and preferences.
NHS cancer networks (partnerships of health service providers, local authorities and the
voluntary sector) have responsibility for delivering cancer services in the UK. Part of their
remit is the establishment of cancer network partnership groups to promote collaborative
working between people affected by cancer and health professionals. The study examined
user involvement from the perspective of service users/people affected by cancer.
The study provides a model for engagement of importance to research/service activity that
seeks to involve people affected by cancer, and illustrates how user involvement can be an
important means of regaining control and ‘normality’ after cancer treatment.
Publications or other outputs related to this research
Cotterell P, Harlow G, Morris C, Beresford P, Hanley B, Sargeant A, Sitzia J, Staley K.
Service user involvement in cancer care: The impact on service users. Health Expectations.
2011. 14, (2). 159-169 DOI: 10.1111/j.1369-7625.2010.00627.x
Cotterell P, Morris S, Harlow G, Morris C, Beresford P. Making Involvement Effective:
Lessons from Cancer Care. (Dissemination booklet) 2009. London, UK: Macmillan Cancer
Support
Cotterell P, Morris C. The impact of involvement on service users. INVOLVE national
conference. 2008. East Midlands Conference Centre.