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We need user/survivor research now more than ever before
Service user involvement in research and user-led research each have their own strengths and weaknesses, which this presentation will outline. However, the central aim of this session is to address the major changes taking place in the production of public research which, I believe, may be endangering our (service users’) research future: The new Research …
Researchers’ Attitudes to Public Involvement in Health Research
The active involvement of members of the public in health research is a political priority, with many funding bodies now requiring researchers to state how the public will be involved in their research projects. There is little information about the attitudes and opinions of health researchers towards this policy and our research aims to address …
When things don’t go to plan: The realities and challenges of user involvement in research
This presentation is aimed particularly at professional and practitioner researchers working in health and social care or academic settings such as universities. It aims to discuss issues related to feedback from a previous INVOLVE conference. This concerns the challenges that may be faced by professional researchers when working with members of the public and when …
DOCTER: A user led research study of the cost of a cancer illness
DOCTER is a consumer led project, which aims to estimate the costs of a cancer illness to the patient and their family. The idea has been refined and developed by the North Trent Cancer Research Network Consumer Research Panel (NTCRN CRP). A pilot study has been carried out by the members of the Research Sub-Group …
Improving clinical research across the UK: who, why, how?
The UK Clinical Research Collaboration (UKCRC) is a partnership of organisations working to revitalise the environment for clinical research in the UK. Through a coordinated programme of work the UKCRC Partners are working to harness and build on the huge research potential of the NHS. The ultimate aim is to benefit patients and the public …
Impact of research on a small population
The key issue addressed by this poster will be the impact of research on a small population affected by a rare condition, Niemann-Pick Disease (NPD), for which there is currently no treatment or cure. The poster will inform people about NPD and the difficulties encountered by peopleaffected by this condition in securing and bringing to …
A mental health clinical trials pilot website
This website was commissioned by the National Institute for Mental Health in England. The project team from TwoCan Associates included a service user, two carers and two researchers. The team researched and reviewed the literature and interviewed service users, carers and researchers to find out what they wanted the site to cover . The site …
Taking part in a steering group for a non-pharmacological intervention clinical trial Taking part in a steering group for a non-pharmacological intervention clinical trial
The Alzheimer’s Society funds research through the Quality Research in Dementia programme (QRD) which, through the QRD Consumer Network, involves consumers in all stages of the selection and administration of the funded research. A proposal to address management of challenging behaviour in care homes for people with dementia was selected by QRD in 2002 and …