Below are some of the questions we are frequently asked by researchers and members of the public interested in public involvement in research.
Several organisations are actively involving children and young people in research and have information and resources on their websites:
The National Institute of Health Research (NIHR) Medicines for Children Research Network (MCRN) www.mcrn.org.uk/children/design
National Children’s Bureau Research Centre (NCB). Includes information on a 2011 conference on young people’s involvement in research and projects involving children and young people: www.ncb.org.uk/policy-evidence/research-centre/involving-young-people-in-research including:
Participation Works. Information on children and young people’s participation including downloadable versions of NCB and PEAR guidelines, ‘how to’ guides including ‘creative methods’ and ‘reward and recognition’, and a guide and toolkit for evaluating participation with children and young people: www.participationworks.org.uk
Children’s Research Centre. Supports child-led research: http://childrens-research-centre.open.ac.uk
Young Researcher Network. Includes toolkit to support young people-led research www.nya.org.uk/integrated-youth-support-services/young-researcher-network
Children’s Rights Alliance for England: www.crae.org.uk
INVOLVE has published: A guide to involving children and young people in research
Visit our Putting it into Practice library and search for children and young people to find out what others have written.
Members of the public actively involved in research are acting as specialist advisors, providing valuable knowledge and expertise based on their experience of a health condition or public health concern. Therefore ethical approval is not needed for the active involvement element of the research (even when people are recruited via the NHS), where people are involved in planning or advising on research, for example helping to develop a protocol, questionnaire or information sheet, being a member of an advisory group or co-applicant. For further information please view guidance developed by INVOLVE and the National Research Ethics Service.
Consider how best to reach people with the different perspectives you need. You could:
Allow plenty of time to make contact with organisations and individuals as finding people nearly always takes longer than you think.
INVOLVE recommend that as a minimum all out of pocket expenses should be covered for members of the public. We do not recommend particular payment rates for involvement in research. This is because the rate offered will need to suit the individual circumstances of the involvement. In the main, this depends on two things:
Rates are sometimes set by a host organisation for the research (for example, the university or NHS Trust). You should check whether the organisation you are working with has a policy for payments and expenses for involvement. In Payment for Involvement, we have listed some examples of rates offered by different organisations and for a range of involvement activities (see page 23-5). These may help you decide which rate to offer appropriate to the involvement in your research. This publication also includes practical information on things you need to consider when making payments and covering expenses.