1. How can I identify people to involve?
2. How can I involve members of the public from marginalised communities?
3. Is it best to start by involving
the public at a particular stage of the R&D process?
1. How can I identify people to involve?
Before you invite people who use services to join your research project, remind yourself about the aims and objectives of the project and what the 'person specification' of the people you want to involve needs to be.
You may need to contact several different organisations that represent or are controlled and run by people who use services. Here are some potential routes to contacting people who use services:
- your local NHS Patient Advice Liaison Service (PALS)
- your local Council for Voluntary
Service (CVS)
- the Voluntary Agencies Directory available from the National Council for Voluntary Organisations (NCVO)
- NHS, Social Care and Public Health organisations e.g. - GP surgeries of local Primary Care Trust (PCT) offices.
- user controlled groups (local and national)
- local libraries ( ask to see their local organisations folder at the information desk)
- the World Wide Web - for example
www.findsupport.co.uk |
www.ukselfhelp.org.uk |
www.volresource.org.uk
- NHS Direct Online
- Race Equality Council
- advertising through local media and newsletters
- advertising in local surgeries, waiting rooms, libraries, social services reception areas etc. or organising an 'event' or special evening.
You’ll also need to think about the different communities who
might have an interest in your research area. For example, will your
research affect elderly people? If so, you should also think about
contacting local elderly people’s organisations. Similarly,
if you are planning to carry out research in an area where
there is a significant minority ethnic population, make links
with these
local communities. When you approach people to get involved in R&D, be ready
to tell them in simple, unambiguous language about:
- the project you are asking them to become involved in (or inviting them to undertake) and its background
- why you are approaching them
- what you are asking from
them
- the level of involvement they can expect and why (consultation, collaboration, user control)
- what resources you can offer to enable them to contribute
effectively
- the benefits to them
- how long it is likely to take
- who the research will benefit
- potential risks
In order to understand the perspectives of people who use services
better, spend time developing a relationship with them.
Visit the people or their organisations on their own ground. Expect some of them to be sceptical. Look at examples
of their work. Ask to see newsletters and annual reports and ask
them to explain what they do. People are more likely to co-operate if they feel that their contribution is respected and valued.
And finally, ask people about how and when they would like to
be involved. For example, it may not be easy or appropriate for a
woman who has recently been diagnosed with breast cancer to become
extensively involved in a research project in this area. She may
prefer to become involved at a later stage.
2. How can I involve people from marginalised communities?
Researchers often find it difficult to access people from marginalised
communities effectively. One answer to this difficulty is to ask these communities
or organisations which speak on behalf
of these
communities - to do this themselves, and ensure you resource them to do so.
So, for example,
if your research is connected with learning difficulties, approach
the local or national People First – an organisation
of people with learning disabilities - on either a local or national level. Organisations like People First are likely
to be able to access people with learning difficulties more easily
than you, as they will already have a relationship with them.
For example, it is useful to approach black and ethnic minority groups where they are and try to understand their culture. This can be achieved by visiting elders, religious leaders etc. and building a relationship based on mutual trust. Without this there is a risk of marginalising them further. You will need to be aware that sometimes community leaders and organisations may not wholly 'represent' those communities, so it is important to check. You should also check whether or not you are approaching the right community.
Contacting relevant national organisations that may have produced guidelines on working with particular groups or communities may be helpful.
Bear in mind that many marginalised communities are understandably
uneasy about having research done ‘to’ or ‘for’ them.
They are much more likely to work with researchers who want to collaborate
with them on research that has been identified by the community as
a priority, or researchers who are willing to support them to undertake
their own research (see the section on user-controlled research in the Briefing notes for researchers).
Further information on involving members of the public from marginalised communities can be found in our summary and full consultation document for involving marginalised and vulnerable groups in research on our publications page.
3. Is it best to start by involving the public at a particular stage
of the R&D process?
Involving people who use services does not mean that consumers must be involved
in every task or at every stage of the R&D process. Enable people to focus their energy on what they can do and what they wish to do,
as you do with other members of the research team.
You could start by involving the public at any stage in
the R&D process. However, we recommend you start by involving people at as early a stage as possible and then follow the process through. You are less likely to involve people successfully
if you merely want them to help you to disseminate the results of
your research project.
See our publication Involving the public in NHS, public health and social care research: Briefing Notes for Researchers for more detailed information
about how to involve the public at each of the different stages of the
research process.
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