Costs and funding

The COMPASS collaborative is building on user involvement already taking place at some centres in the collaboration.

Edinburgh

The Primary Palliative Care Research Group at the University of Edinburgh brought together two groups of patients with cancer and carers for a study of the delivery of cancer palliative care in primary care. These groups continue to meet although the initial project has stopped. They are now happy to comment on any aspects of new projects, and wish to steer a project themselves on fatigue. They have specifically advised on how the research group might conduct a study of advance care planning in the community. The research group has also more recently help set up a Heart Failure Forum where patients and carers attend to discuss and support each other, and recent projects have had patients with cancer on steering groups. For further information, contact Dr Scott Murray **, Dr Marilyn Kendall, Carolyn Morris.

Stirling

At the Cancer Care Research Centre at the University of Stirling, people affected by cancer are actively involved in a range of activities. Fifteen groups of people affected by cancer meet regularly across Scotland and feed into our research agenda. People affected by cancer are involved in the Centre in a number of ways:

• A former breast cancer patient is interviewing Health Board Chief Executives about their perceptions of involvement. The interview data will contribute to a three-year study of patient experiences in Scotland.
• A patient and carer recently presented a workshop, with CCRC staff, at the Royal College of Nursing conference in Dundee on the involvement work of people affected by cancer at the Centre.
• Recent rounds of research staff appointments have involved people affected by cancer. All applicants who are invited for formal interview are also invited to attend an informal meeting composed primarily of members of the Centre's Patient and Carer Advisory Groups. This is now part of the standard recruitment process and forms part of the CCRC Strategy.
• During a recent Open Day at the Centre, a former lung cancer patient contributed to a radio interview about the involvement work at CCRC, while other people affected by cancer spoke to visitors about their roles in the research advisory groups.
• Several Advisory Groups are involved in developing research bids, for example a group of men affected by prostate cancer are advising the researchers on a proposal about preferences and another group of patients and carers are advising researchers on a proposal investigating the impact of cancer on the whole family.

Worthing

The research team at Worthing and Southlands Hospitals NHS Trust, working in collaboration with King's College London, have recently completed a number of studies on public involvement in cancer care and cancer research, including an evaluation of Consumer Research Panels in cancer research networks. Dr Phil Cotterell is about to begin a study, funded by Macmillan Cancer Support, to explore the impact of service user involvement on the lives of people affected by cancer. For further information, contact John Sitzia (Tel: 01903 285224)

CECo

COMPASS and CECo (the Cancer Experiences Collaborative) are the two NCRI Supportive and Palliative Care Research Collaboratives. Patient and Public Involvement is a key area for joint working by COMPASS and CeCO, with plans to be agreed in due course. CECo have produced a short and useful guidance document to user involvement.