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Frequently Asked Questions
Below are listed some of the questions frequently
asked by researchers and members of the public who
are interested in service user involvement in
research.
Click on each section below to expand and view answers.
1. How can one or two people who use services
be ‘representative’ of all the relevant groups?
It is not reasonable to expect one or two people
to be representative of all people who use similar
services. But then it’s not reasonable to expect one
doctor to be representative of all doctors either.
It might be helpful to think about seeking people's
perspectives rather than representativeness. If you
want a range of perspectives, involve a range of
people, and give the people you do involve the time
and resources to network with other people.
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2. How can trained or ‘professional’ members of
the public reflect the views of ‘typical’ patients?
It’s important to think about your reasons for
involving people who use services when answering
this question. If you want two people who use
services to sit on a research steering group, they
will need to be willing and able to participate in
meetings, and able to put their views across to a
variety of individuals with a range of professional
expertise. These 'representatives' may not be
‘typical’, but they will be able to contribute
important insights from a patient/user/public
perspective and will be also able to access and
present a range of people's views.
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3. Why can’t health professionals act as
advocates for people who use services?
Research shows that people who use services and
professionals often have different priorities for
research. Even when health professionals are
patients they may have a dual agenda. For example,
in Australia the National Breast Cancer Centre
carried out a study to discover the views on
priorities for research in breast cancer as seen by
various stakeholders, both researchers and
‘patients’. They found that women with experience of
breast cancer saw priorities differently from
researchers. They made ‘risk factors’ their highest
priority for research, a topic that came fairly low
on the scale for clinicians, researchers and policy
makers.
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