Research project
Title: Exploring the impact of user involvement on health and social care services for cancer in the UK
Project timescale: From 01 March, 2008 to 31 January, 2009
(Added to website on: 23 March, 2010 - Date last updated: 06 February, 2013)
Source of funding:
Macmillan Cancer Support
Aims: The main aim of this study was to explore the effect service user involvement activities have on services for people affected by cancer. It also aimed to recommend effective and acceptable ways of routinely measuring the contribution of user involvement activities to service improvement.
Research designs used:
Case Study
Evaluation
Study of views/experiences
Other:
Methods used to collect data:
Documentary analysis
Interviews
Questionnaire survey
Other (please specify): Organisational connections mapping form
Research project description: Macmillan Cancer Support in partnership with the NHS and service users has been active in supporting the development of user involvement in NHS cancer networks. The present study aimed to build on work from previous studies through a specific focus on outcomes and impact. The study combined analysis of written documents (such as annual reports) with in-depth case studies of five individual Cancer Network Partnership Groups across England, Wales and Scotland. The case studies focused on the way the groups connect with key people outside the groups and may influence the delivery of cancer services.
Stages at which the public were involved:
Managing the research
Seeking funding / applying for funding
Designing the research instruments
(eg questionnaires, patient information sheets)
Assisting in finding and designing appropriate
ways of approaching participants
Undertaking the research
Final Research Report
Analysing the research
Contributing / commenting on final report
Writing about the research eg
publications, newsletters
Disseminating research
Planning the research
Other:
Description of public involvement in research stages: The two lay co-researchers were involved from the outset in applying for funding and then in designing and conducting the research. Lay members of a Lancashire and South Cumbria Cancer Network Partnership Group were consulted in the design stage of the project. A lay member from Macmillan Cancer Support sat on the Steering Group.
Training and support provided for either members of the public or researchers involved in the project: The two lay co-researchers were trained to conduct interviews. The training included interviewing technique and practical matters, such as managing the recording equipment.
Examples of ways the public have made a difference to the research project: The lay co-researchers were constantly involved in commenting and making suggestions throughout the project. One of them emphasised the value of user involvement to the funders during the research bid. One of them designed a mapping form to assist with clarity in the interviews. Their insights from conducting the interviews were important in the analysis and writing up. The lay members of a Lancashire and South Cumbria Cancer Network Partnership Group provided insight into the workings of the partnership groups from a user perspective. The lay member from Macmillan Cancer Support helped us concentrate on difficult issues by asking challenging questions.
Evaluating the impact of public involvement in the research: Yes, but time constraints and illness intervened.
Details of publications or reports resulting from the research: Attree, Pam, Morris, Sara, Clifton, Maggie, Hinder, Sue and Vaughan, Suzanne (2009) Exploring the impact of user involvement on health and social care services for cancer in the UK, Project Report, Lancaster, UK (Unpublished). Attree P, Morris SM, Payne S, Vaughan S, Hinder S (in press) Exploring the influence of service user involvement on health and social care services for cancer, Health Expectations. Cotterell P, Morris SM, Harlow G, Morris C, Beresford P (2009) Making User Involvement Effective: Lessons from cancer care, London: Macmillan Cancer Support.
Links to Reports:
Exploring the impact of user involvement on health and social care services for cancer in the UK.
Was/is your project user controlled: No
For further information on the project, please contact:
Dr Sara Morris
Principal Investigator
Lancaster University
School of Health and Medicine
Division of Health Research
Lancaster University
Lancaster
Lancashire
LA1 4YD
United Kingdom
s.m.morris@lancaster.ac.uk
01524 592656
Website: http://www.lancs.ac.uk/shm/dhr/
Dr Pam Attree
Lancaster University
p.attree@lancaster.ac.uk
01524 594103
Website: http://www.lancs.ac.uk/shm/dhr/
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