Supporting public involvement
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social care research

NSH National Institute for Health Research

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Questions & Answers

Section B: Issues about 'representativeness'


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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Last Updated 06/11/2009 17:23:11
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