User Controlled Research - what is it and how is it to be done?
This new, nine-month project is being carried out in the UK jointly by
Shaping Our Lives and Folk Us with funding from Involve.
Although there has been considerable discussion about it, there is not
yet agreement about what constitutes a 'user controlled' organisation
among disability, health and social care service user organisations.
The development of user controlled research has been underpinned by
similar aspirations, but so far there have been even fewer opportunities
for service users/user researchers to work through systematically what
user controlled research might mean; look like and achieve.
This hasn't discouraged the development of a significant and growing
body of initiatives. Service users and service user researchers identify
particular values in such research.
This new project aims to coherently develop thinking about
user-controlled research and subject it to rigorous review. It is
working with a broad definition of social care service users that
includes disabled people, mental health service users/survivors, people
with learning difficulties, children and young people, and older people.
The project is starting with no assumptions about a 'correct' approach
or definition of 'user controlled' research. There are likely to be a
range of ideas about what constitutes user controlled research.
For example, 'user controlled' might mean being primarily accountable to
an independent user controlled organisation/the people being studied or
research participants themselves.
Other questions we will be addressing include:
. Does the researcher have to be a service user in user controlled
. Must such research be based on a social model approach?
. Who has to be involved?
. What kind or level of involvement is needed for a research
project to be user controlled?
To achieve this we will be carrying out a literature review and some
work with service users who are involved or have an interest in research
with a questionnaire and some group interviews.
We would be very interested to hear from anybody with recommendations
for documents to include in the literature review.
We also want to make contact with service users who are involved in
research work who are willing to complete a questionnaire about these
In the early summer we will also be holding three meetings with small
groups of users interested/working in this area in the UK, so it would
also be useful to hear from people who would like to take part in these
If you are interested in any part of this work, please contact the
project worker, Michael Turner, via [log in to unmask] -
please put 'Attention Michael Turner' in the subject line.
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