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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 …
Making a difference in the mental health services
This paper provides an account of an action research project undertaken by Suresearch, a Midland based user-led network of people using mental health services and their allies involved in research and education. This project, commissioned by the Birmingham and Solihull Mental Health Trust, was designed to promote user involvement in clinical governance in the Trust. …
Implementing the Statement on Consumer and Community Participation in Health and Medical Research in Australia
This report focuses on disseminating and implementing research, based on an Australian pilot. In 2004, the Consumers’ Health Forum of Australia (CHF) and the National Health and Medical Research Council (NHvIRC) are collaborating to implement their joint Statement on Consumer and Community Participation in Health and Medical Research. CHF’s membership comprises over 100 Australian health …
Collaborative research with older gay men and lesbians
This paper examines a recently funded project into the needs of older gay men and lesbians in the Bournemouth, Poole and Dorset area, funded via a Community Fund grant. This is a joint project between Bournemouth University and Help and Care, a local voluntary sector agency working with older people and their carers. The paper …