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Research project: Macmillan Listening Study: Listening to people affected by cancer about cancer research - Dormant - Dormant

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Given the importance of cancer research in the UK , there is a great need to ensure that research that is conducted reflects the needs and experiences of people affected by the disease. Evidence suggests that patients and carers can feel they have little access to information from cancer research and that research often serves the interests of academics rather than users.


Involving patients and carers in prioritising research has been cited as an important factor in restoring the confidence of the public in cancer research. Furthermore, priority setting studies have shown that the priorities of patients differ from professionals.

To date, no published account has been found of patients and carers being involved explicitly in prioritising research questions. Cancer research priority setting exercises have usually involved health professionals, such as oncology nurses, identified through particular institutional settings, such as hospitals or through membership of professional organisations. Priority setting exercises with people affected by cancer (either as patients, family, friends or carers) are more complex as they often come from a variety of backgrounds and have varying experiences. Studies have shown that participatory research techniques are particularly effective in research that seeks to involve patients and carers in innovative ways. Hence adopting a participatory approach to the priority setting exercise will ensure that any research will remain sensitive and appropriate to people affected by cancer. By undertaking the study in this manner, it will be possible to ensure that the views of people affected by cancer are listened to when considering the direction cancer research might take in the future.
Main question(s)

  • What are the views people affected by cancer have about cancer research?
  • What are the research priorities of people affected by cancer?


Participatory, exploratory qualitative study.

Main outcomes

Findings from the study will provide valuable insights into how people affected by cancer view research into treatment and care. These findings will be made available to cancer research funding bodies, health policy makers, community organisations and the wider public, and will enable funding bodies to include the views of people affected by cancer when considering the direction cancer research might take in the future.

Project team

Jessica Corner, David Wright 

Project funder

Macmillan Cancer Relief 2005

Related research groups

Complex Healthcare Processes

Key Publications

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