To address the question
about who to involve, you first need to think about the aims and
objectives of your R&D programme or
project. Prepare a brief ‘job description’ to enable
you to think more clearly about who you might involve but be flexible. Ask yourself what range of experience perspectives and expertise you need from people who use services to ensure your project is sufficiently tested and well informed. You will also need to ask yourself what support and training you are willing to offer them, if any. We recommend that you involve two or more people who use relevant services, so that they are less likely to be isolated amongst a group of professionals. Often the best way to start is to go to organisations such as self-help groups or voluntary organisations to hear their views collectively.
Remember that there are different types of organisation – for example self
help groups, voluntary organisations that campaign for improved services, pressure
groups, user controlled organisations, advocacy groups and so on - but not all will be interested in your work. There are also different categories of people who use services:
- patients and potential patients
- informal (unpaid) carers
- people who use health and social services
- members of the public who may be targeted by health promotion programmes
- organisations that represent the interests of people who use health and social care services
- groups asking for research because they believe they have been exposed to potentially harmful substances or products e.g. asbestos or pesticides
You’ll need to think about which people are the most appropriate to involve. Ultimately, who is the 'end user' of your research? For example, you may want to have
input from
people who have experienced the specific condition, situation, service or treatment you are addressing in your research project, in order to ensure that the issues you are covering are relevant to them as 'end users'. It would therefore
be more
appropriate to involve someone with direct experience. A carer, for example does not have the same perspectives as the person for whom they are caring, so might not be an effective 'proxy'. If carers were the 'end users' of the research then the reverse would apply.
You’ll also need to think about the broad topic area that
you hope to address. If you plan to look at a research project related
to people affected by Alzheimer’s Disease, for example, you
should contact the local and national Alzheimer’s Society.
Consider that some people may choose not to become involved in
your work – because their aims do not match yours, because
they do not have the time, or because the emotional or practical
costs of involvement may be too high.
Consider also that there is research for which people who use services have identified a need themselves, e.g. community surveys instigated by residents as part of community development.
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