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It’s not just a headache: the contribution of patient researchers to a qualitative study of migraine
This presentation focuses on the contribution of the patient researchers at the design stage. Originally the interviews were to be structured along the theme of the migraine “journey” and what milestones or stages of the journey were significant for the sufferers. After pilot interviews it became apparent, particularly to the patient researchers, that the idea …
Making NICE Research Nicer: Involving patients, carers and the public in the National Institute for Clinical Excellence (NICE) research agenda
This workshop will Describe the work of NICE and existing opportunities for patient, carer and public (user) involvement Describe the new NICE R&D programme Involve workshop participants in translating the principles of user involvement into practice to identify roles for patients, carers and the public in the new NICE R&D programme Discuss ways of disseminating …
Consultants’ views on users? involvement in clinical research investigators
It is not known how many healthcare professionals and NHS managers within the South West London Cancer Research Network (SWLCRN) currently involve users in the research process or what role if any users could play within the research process. The SWLCRN Consumer Research Advisory Group felt it was appropriate to undertake a survey of consultants’ …
Involving users in data collection: The findings of a systematic literature review
As part of a systematic literature review of user/carer involvement in research design we sought to find empirical studies giving detailed information regarding user involvement in data collection. Thus in this presentation we will address the conference theme of undertaking research. Four electronic databases were searched (ASSIA 1987-2003; IBBS 1987-2003; CINAHL 1982-2003 and Medline 1966-2003) …
It’s our project! People with learning difficulties managing and doing research
We are a group of people with learning difficulties called the Learning Difficulties Research Team. The Department of Health asked us to find out all about good ways to involve people with learning difficulties in research. We are doing this by looking at what’s happened in 12 research projects funded by the government through the …
What do you think about your transport? A survey conducted by service users and carers
A survey was conducted on behalf of the Glasgow Learning Disability Partnership by a research team of people with learning disabilities, their supporters and carers on the topic of transport arrangements. The respondents were people with learning disabilities, parents and carers who used a day centre service (Priesthill in Glasgow). The paper will consider the …
The development and evaluation of a collaborative model for Consumer Research Panels in Cancer Research Networks
The involvement of consumers in research is an increasingly important ethical and political priority. However, within Cancer Research Networks initiatives to involve consumers are at present unco-ordinated and existing links need to be developed to establish ways of building sustainable programmes of involvement. This paper will report on a joint initiative by the National Cancer …
Involving people with dementia and their carers in research
People with dementia have largely been excluded from all stages of the research process, mainly because of the perceived challenges to verbal communication and understanding. A ?user panel’ consisting of people with dementia and their carers was developed as part of a wider research study examining quality of life outcome measures for people with dementia …