DELAY website - service user page

Information on Service User Involvement The Launch Event
The Panel The Panel is a partnership between people living with Rheumatoid Arthritis, care-givers, members of the public, researchers at the Universities of Birmingham, Keele and London and the NHS. Members of the Panel were invited to take part through a national recruitment process. Currently there are 16 people on the Panel. The Panel also work closely with patient organisations such as the Birmingham Arthritis Resource Centre.
Aims of the Panel The Panel supports the Rheumatoid Arthritis DELAY project funded by the Research for Patient Benefit programme which is part of the National Institute for Health Research (see the Project Information Sheet). In this project patient and carer involvement is not a stand-alone activity but rather an integral and essential part of all stages of the project. Patient and carer involvement in this project means that people are involved as ‘partners’ in the research process and not solely as ‘data providers’ i.e. participants in a study. Direct patient and carer involvement will support for instance (also see Role Description for further details): Recruitment and consent - they will contribute to the development of participant information sheets and where possible will act as a patient contact for the project. Data gathering – through developing patient information leaflets explaining the survey tools. Interpretation of findings – through the development of recommendations for practice and patient information leaflets (top-tip leaflets). Dissemination of the findings through existing networks. Supporting the development of the patient and carer part of the project website. The message of the Panel is that we all have much to learn from each other and that having direct involvement of patients and carers at each stage of this project is crucial to developing quality information that is of relevance and use to the wider patient and carer community as well as for NHS staff.

How it works The Panel is co-ordinated by Sue Thomas and Ian Rowan. It is predominately facilitated by email but other forms of communication and discussion are used. The Panel was set up in March 2011 with an initial preparation event in May 2011. It will exist for the duration of the project (3 years). The Panel will be reviewed yearly by both its members and by an external patient/carer reviewer to ensure it is fit for purpose. Reimbursement for members’ involvement is intended to meet their out of pocket expenses (including travel costs) as well as reflecting the time and effort for involvement (see Code of Practice).

Contacts If you are interesting in being part of the service user group please contact.
Rebecca Stack r.stack@bham.ac.uk Tel: 0121 414 6787	Sandy Herron-Marx	Sue Thomas	Ian Rowan