Macmillan Listening Study

The Macmillan Listening Study: Listening to the views people affected by cancer have about cancer research (MLS)

Introduction

Members of the public are increasingly consulted over health care and research priorities. Patient involvement in determining cancer research priorities, however, has remained underdeveloped. This is significant given patient derived priorities can enhance public confidence and increase the relevance of research. Consequently, Macmillan Cancer Support initiated the first study to involve cancer patients across the UK in identifying priorities for research investment. Aims of this study were:

• To explore the perceptions people affected by cancer have about cancer research
• To identify the cancer research priorities of people affected by cancer
• To identify potential gaps in current knowledge about cancer, its treatment and care from the perspective of people affected by cancer

• To provide a mechanism by which patients can draw upon their experiences to comment on the direction of cancer research

Outputs

Wright, D.N.M.; Corner, J.; Hopkinson, J. and Foster, C. (2006) Listening to the views of people affected by cancer about cancer research: An example of participatory research in setting the cancer research agenda. Health Expectations. 9: 3-12.

Wright, D., Hopkinson, J., Corner, J. & Foster, C. (2006) Involving cancer patients at the end of life as co-researchers: Experiences from the Macmillan Listening Study. Palliative Medicine, 20, 821-827.

Corner, J., Wright, D., Foster, C., Gunaratnam, Y., Hopkinson, J. & Okamoto, I. (2006). The Macmillan Listening Study: Listening to the views of people affected by cancer about cancer research.  Macmillan Cancer Support: London. 

Corner J, Wright D, Hopkinson J, Gunaratnam J, McDonald JW, Foster C (2007) The research priorities of patients attending UK cancer treatment centres: findings from a modified nominal group study, British Journal of Cancer. 96: 875 - 881.

Wright, D. N. M., Corner, J.L., Hopkinson, J.B. & Foster, C.L. (2007). The case for user involvement in research: the research priorities of cancer patients. Breast Cancer Research, 9 (Suppl 2): S3.

Wright, D. & Foster, C. (2007) Involving people affected by cancer in research. Macmillan Voice, Summer Issue

Conference presentations

Wright, D., Corner, J., Foster, C., Gunaratnam, Y., Hopkinson, J., Okamoto, I. & the Macmillan Patient and Carer Co-researchers. Patient research priorities differ from those of clinical scientists. Controversies in Breast Cancer, Edinburgh, 2007

Wright, D., Corner, J., Foster, C., Gunaratnam, Y., Hopkinson, J., Okamoto, I., and the Macmillan Patient and Carer Co-researchers. The research views and priorities of people affected by cancer: Findings from the Macmillan Listening Study.  INVOLVE  5th National Conference People in Research, University of Hertfordshire.  September 2006

Wright, D., Corner, J., Foster, C., Gunaratnam, Y., Hopkinson, J., Okamoto, I., and the Macmillan Patient and Carer Co-researchers. The research priorities of cancer patients: Findings from the Macmillan Listening Study. The 5th Annual Scholarship Conference: The impact of research on health care policy, practice and education: Is it visible?, University of Southampton.  July 2006

Wright, D., Walton, J, Formstone, N., et al. Listening to the patients' voice when developing cancer services - invited Virtual Seminar Live Webcast seminar series, University of Plymouth.  June 2006

Wright, D., Corner, J., Foster, C., Gunaratnam, Y., Hopkinson, J., Okamoto, I., and the Macmillan Patient and Carer Co-researchers. What consumers want to see in Cancer Research - invited plenary Collaborating in Cancer Research, Wales Cancer Institute, Cardiff.  March 2006

Corner, J. and Wright, D. The Future Research Agenda: The perspectives of people affected by cancer - invited plenary National Cancer Research Institute 1st Cancer Conference, Birmingham.  October 2005

Wright, D. and Walton, J. Involving cancer patients and carers as co-researchers: Learning from the Macmillan Listening Study Social Research Association annual conference, London.  December 2005

Wright, D. A Voice for All: the advantages of working in partnership with hard to reach groups - invited paper Network Development Programme conference, Heathrow. October 2005

Wright, D., Sayers, M. and Walton, J.  Collaborating with consumers in cancer research: Experience from the Macmillan Listening Study - invited paper National Cancer Research Institute 1st Cancer Conference, Birmingham.  October 2005

Wright, D. Patient Involvement and Research Ethics: Experiences from the Macmillan Listening Exercise INVOLVE 4th National Conference, People at the heart of research, Nottingham. November 2004

 

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