Involving users (i.e. patients, their families and carers and the public) in all stages of the development and conduct of your research will undoubtedly improve its quality. User involvement is often viewed as a “tick box” exercise, however, done well it can help ensure your research meets user’s needs, is practical, runs smoothly and ultimately translates into real benefit for patients. Funders are increasingly requiring evidence of genuine user involvement in their applications.
Whatever the users’ experience or background, they will offer you a different perspective on your research and will provide insight into how your project will affect its participants and the wider community. There are a number of stages of the research process in which you can involve users:
- Setting the research agenda (See Section 2) – involving users in deciding what is important to them and not just of academic interest to you.
- Developing the proposal (See Section 3) – getting input from people who may participate in your research or who have an interest in it will result in a more pragmatically designed project with a higher chance of success.
- During the conduct of the project – getting feedback from those participating in your study or from other users will allow you to make improvements and overcome problems as they crop up. This will help ensure the project runs smoothly, achieves what you set out to do and finishes on time.
- Disseminating results (see section 10) – traditionally researchers are very poor at making their results known outside of the academic world. There are easy ways of providing information to users once the study has finished, which may lead to gaining more support/input for your future research.
There are a number of sites that you can look at to get you started:
- INVOLVE is a national advisory group to promote and support active public involvement in NHS, public health and social care research. They publish comprehensive briefing notes for researchers.
- People in research aims to help members of the public make contact with organisations that want to actively involve them in clinical research. The heart of the website is a searchable database of information about organisations or groups that sometimes look for members of the public to get actively involved in their work.
- Health R&D North West has a new Public Involvement Partnerships in Research NoW which is a facility for bringing North West researchers and members of the public together
- Patient and Public Involvement Specialist Library contains information on how to involve carers, children, minority ethnic groups, older people, people with disabilities, people with learning disabilities, people with mental health issues in research
- UK Clinical Research Network Information on training, publications and leaflets are available here.
- NHS Centre for Involvement leads on Public & Patient Involvement in the NHS.
- “Ten Great Myths of Patient & Public Involvement” which is an easy to read article.
You will also need to take into account the different needs of some users, for example, those who have a disability that restricts mobility or communication, children and young people, those with mental health issues or who lack mental capacity and those who do not speak or write English.
Information on overcoming barriers for these groups can be found at many of the UK Clinical Research Network websites:
- Medicines for Children Research Network
- Stroke Research Network
- Dementias and Neurodegenerative Diseases Research Network (DeNDRoN)
- Mental Health Research Network - Service User Research Group for England (SURGE)
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