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 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.

If your research concerns HCAI you can of course contact us if you are interested in using SURF Members or you may wish 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 internet - for example: www.findsupport.co.uk, www.ukselfhelp.org.uk, www.volresource.org.uk, www.invo.rg.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.

Return to the top of page

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.

Return to the top of 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, INVOLVE 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 INVOLVE's 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.

Return to the top of page