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Influencing the research agenda ? findings from an independent evaluation of a Cancer Network Consumer Research Panel
Development of a local Cancer Network Consumer Research Panel started in April 2002. The aim of the panel was to support and train consumers to be involved in cancer research at all stages of the research process. This paper presents the findings of an independent evaluation of the panel undertaken by the University of Sheffield. …
“No – You don’t know how we feel” – Getting the message across: young people, facing the life-threatening illness of a parent, make their voices heard
The Video Project was a collaborative inquiry with 9 young people, facing the serious illness of a parent, to discover their views and needs, through the making of a video. The film was aimed not at professionals but at families in a similar situation and its aim was to improve the way children are supported …
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’ …
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 …
Making decisions about how to apply what you’ve found out: Involving people with learning difficulties in a European research project
‘I like, I love’ is a research project that covers 6 European countries, looking for a new resource for people with learning difficulties around sexual health that is useful in all partner countries. This report from the researchers involved in the project will consider the professional involvement of people with learning difficulties. The report will …
Patient and carer involvement in NICE clinical guidelines: Building on the good, learning from the not-so-good
From their inception, Guideline Development Groups (GDGs) commissioned by the National Institute for Clinical Excellence (NICE) have included, as a minimum, two patient and/or carer members. This paper presents the findings of a project to evaluate the methods and impact of patient and carer involvement in the first clinical guidelines developed on behalf of NICE. …