Frequently asked questions
Below are some of the questions we are frequently asked by researchers and members of the public interested in public involvement in research.
- working with research funders to prioritise research;
- offering advice as members of a project steering group;
- commenting on and developing research materials;
- undertaking interviews with research participants.
- potential patients;
- carers and
- people who use health and social care services as well as people from organisations that represent people who use services.
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:
- Guidelines on research with children and young people: www.participationworks.org.uk/resources/guidelines-for-research-with-children-and-young-people
- The Pear Project – a (now completed) project involving young people in public health research, including a conference and guidance for researchers: www.ncb.org.uk/pear
- Viper young researchers – a project involving young disabled people in research: www.councilfordisabledchildren.org.uk/what-we-do/work-themes/participation/viper/young-researchers
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.
Consider how best to reach people with the different perspectives you need. You could:
- advertise in GP surgeries, outpatients or local newspapers
- talk to local or national patient support groups
- search online for relevant organisations
- ask community members or patients how best to find people who might be interested in getting involved
- talk to other health and social care professionals such as community development workers, social workers, health visitors, GP practice managers
- contact the Patient Advisory Liaison Officer based at your local NHS Trust
- put details of your opportunity for people to get involved on the People in Research website so interested members of the public can make contact with you.
Allow plenty of time to make contact with organisations and individuals as finding people nearly always takes longer than you think.
- The nature of the task asked of members of the public - how complex is it and what level of skill, expertise and advance preparation is required? For example, the rate offered for taking part in a one-off consultation event might differ from the rate offered for membership of an on-going research panel with complex papers to review and comment on prior to each meeting.
- The amount of funding available to support involvement – different organisations will have access to different funding amounts to support involvement. We do not want organisations to feel inhibited from doing involvement if they do not have the same level of funding, and therefore cannot offer the same rates, as other organisations.