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The user’s voice – experiences of feeling or not feeling respected during psychiatric hospitalisation: inpatient views
User-led research: an example of good practice This presentation is about a piece of research which was part of a postgraduate degree supervised at Roehampton University in 2005. Eleven people who had been psychiatric inpatients were asked to talk about their experiences of feeling or not feeling respected during their time in hospital. The research …
Why tell us?
Involving older people in research on how older people cope with loneliness and isolation. Myself Joan Brogden and co-presenter Elaine Jones are members of a team of older people who have joined together to research into how older people cope with the problem of loneliness and isolation. We called the project "HELLO" as this is …
Older People in Research: a case study from the London Primary Care Studies Programme
This paper aims to share the experience and reflections of involving older people in one clinical research project. The London Primary Care Programme (2000-2004) funded 11 research projects with the explicit brief to involve consumers in the research. The Identifying Unmet Needs (later the SPICE) study was one of these. The aim of the research …
Pitfalls and peaks: the formation of a Consumer Research Panel (CRP)
Consumer Research Panels are being developed over the next two years in Cancer Research Networks in England. They aim to advance consumer involvement in NHS cancer research, through their establishment in three pilot site cancer networks. The panels are made up of consumers (patients and carers) who in some way have experience of cancer services. …
Sharing successes: an encouraging process
The paper will describe a process used to encourage and promote the acceptance of public involvement in health research. The ‘Success Stories’ work was facilitated by a sub-group of North West Users Research Advisory Group (NWURAG), which is a mix of lay, academic and health researchers who engage in a range of activities to champion …
Challenges in maximising recruitment to a randomised controlled trial through working with a service user group
This paper concerns a study in which service users with aphasia and/or dysarthria worked alongside researchers, within a participatory action research framework, to design recruitment materials for use in a large RCT (the ACTNoW trial). Eight service users (with aphasia and/or dysarthria) and two carers were recruited to participate in monthly meetings facilitated by a …
When should we help with recruitment to research? Developing guidance for voluntary health organisations
Researchers often ask voluntary health organisations to help with finding people to take part in research. It can be difficult for organisations to know if the research is of good quality and when to tell their members about it. This project has been funded by the Wellcome Trust. It will find ways to help voluntary …
The role of patients and carers in device design: the Healthcare Technology Cooperative (HTC) model
Designing and Developing New Products to Manage Incontinence Incontinence can affect 1 in 3 women and 1 in 9 men at sometime in their lives. Products to manage this embarrassing and isolating condition are essential to enable people with bladder and bowel problems the security they need to enhance their quality of life. We realise …