Patient involvement and research ethics: Experiences from the Macmillan Listening Study

2004 Conference

This paper reports the experiences of setting up the Macmillan Listening Study. The study is commissioned and funded by Macmillan Cancer Relief and aims to explore the attitudes people affected by cancer have about cancer research and to identify their research priorities. The study is participatory in design and thus involves cancer patients and carers as co-researchers or advisers throughout the research process.

The paper focuses on a fundamental aspect of the research cycle ? the process of ensuring ethical approval. Multi-Centre Research Ethics Committees, Local Research Ethics Committees and local R&D exert a significant influence over research, ensuring that studies are conducted in a safe and appropriate manner.

Research generates specific ethical challenges when people affected by cancer are involved in developing the study design and delivering the project. These challenges include, the consideration of the psychological and other support needs of co-researchers, ensuring the confidentiality of research information, ensuring co-researchers are not over-committed, and responding to potentially prejudicial views of patients by committees. The paper will therefore raise issues of how to ensure that involving people affected by cancer as co-researchers is ethical, as well as indicating the concerns ethics committees may raise when reviewing studies of this nature.