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.
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.
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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