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Discovering the research priorities of people with type 2 diabetes
This paper describes a piece of research in which diabetes service users collaborated at every stage. A reference group of health professionals and service user representatives was set up to define our research question. We wanted to find out what the important areas of diabetic people’s lives were. We aimed to define and prioritise some …
Service user involvement in forensic mental health research
Although substantial work has been undertaken in developing methods of involving service users in research, the forensic mental health context does present a number of unique problems associated with access, the need to maintain security, confidentiality and the protection of individuals. The UK Department of Health’s Forensic Mental Health Research and Development Programme commissions research …
Public perspectives on assessing what works in health care
We have gathered public perceptions on assessing ‘what works?’ in health by asking people what is most important to assess and how should this be done. We have done this with people working with the Cochrane Collaboration and the NHS Health Technology Assessment Programme. Here we shall present perceptions from the public on testing ‘what …
Involving users in NHS research
This paper will provide a model for involving users in the NHS research process as a mechanism of improving quality of research. The chosen conference theme will be addressed through discussion of the development and implementation of the model. The issues are: Identifying and involving users: The Cardiothoracic Centre ? Liverpool NHS Trust (CTC) has …
Creating a dialogue: Helping researchers put user involvement into practice
The North West Users Research Advisory Group (NWURAG) has been meeting regularly since 2000 with the aim of promoting the NHS policy of User involvement in R&D in the North West region. The Group comprises 50% lay members and 50% professionals (a mix of academics and health service personnel). The Group is supported by Health …
Best practice in involving service users and carers in research: Confronting the issues and doing it for real
We aim to tease out the discrepancies between theory and practice when involving service users and carers in research and to make participants discuss the issues behind the reality of “meaningful involvement”. In order to achieve this, we will use our own involvement in collaboration with the local university. We are very aware that we …
Patient involvement and research ethics: Experiences from the Macmillan Listening Study
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 …
Undertaking palliative care research: Service users involvement
This paper will discuss a research project being undertaken in palliative care that includes the experience, knowledge and perspectives of service users throughout the research process. This inclusion is achieved via a research User Advisory Group that work with the researcher influencing all stages of the research. The research itself is concerned with the accounts …