By Hayley Reed and Oliver Sanders

Development and Evaluation of Complex Interventions for Public Health Improvement (DECIPHer) is a Public Health Research Centre of Excellence that conducts research on interventions to promote children and young people’s health and wellbeing. The centre is a collaborative partnership between the Universities of Bristol, Cardiff and Swansea. Public involvement is a central part of the centre’s work and we have developed a research advisory group of young people aged 14-21 called ALPHA (Advice Leading to Public Health Advancement). The group of up to 20 young people live in South Wales, and were recruited through youth centres and projects. Their role is to advise researchers by discussing and debating their views on public health topics and the research the centre plans to carry out.

The group has been developed for the centre and works across a range of projects. The advantages of this are that:

  • centre funding allows employment of staff, specifically to support public involvement, with experience and skills of youth work and research
  • the group works on projects during bid development, the stage of the research process at which it is most difficult to resource public involvement but also arguably the most important as many research decisions are made during this stage
  • young people can develop long term relationships with centre staff which is key to maintaining their involvement
  • young people can provide feedback for researchers after involvement sessions which the centre uses to improve future interactions with young people.

We have learnt that recruiting young people into an advisory group based in a university should be done through a stepped approach. Firstly visiting young people in places they are comfortable (e.g. youth clubs and schools) and giving them clear information on what the group’s role is. The second step is to invite the young people to come into the university, with support from a trusted adult if they wish (e.g. a youth worker), for a trial meeting for them to decide if this is a group they want to be part of.

There are important factors that help to support young people to be involved which may be different to involving adults. Providing pre-paid transport is key as young people cannot always afford to pay for transport in advance and get reimbursed. Accrediting their time is valuable to young people, as they are in the stage of life where they need for the first time to prove to potential employers or educational establishments that they have skills and experience. In ALPHA this accreditation has been through Millennium Volunteering, the Duke of Edinburgh’s Award and individual references for jobs, and is additional to giving young people vouchers for attending meetings.

To give young people a real voice we have found it is important to allow space in the meetings for them to raise their own issues or ideas. Therefore we developed a system where the young people can write what they want from the research centre and we update at the meetings on what we have been able to do with their ideas. In the past the young people have asked to shadow researchers to see what doing research is like in the ‘real world’. We were able to make this happen in schools in South Wales and Bristol, and young people really valued the experience (see their blog at http://decipher.uk.net/the-reality-of-research-in-schools-young-peoples-perspectives/).

At the individual project level, an example of how young people’s input has helped shape research is with a project about the role of social media after a youth suicide. The group made a distinction about how social media would be used after a suicide, to after an accidental death; therefore the researcher decided to use a comparison of these different types of death. Another project enabled the young people to design the mascot and create the study name as well as help write all of the information which will go to participants in the study.

ALPHA website: http://bit.ly/1yJiQ24

Twitter: @ALPHA_DECIPHer

ALPHA film is available at: www.youtube.com/watch?v=SRf1jSDwig8

DECIPHer website: http://decipher.uk.net/

Twitter: @DECIPHerCentre

The work was undertaken with the support of DECIPHer, a UK Clinical Research Collaboration (CRC) Public Health Research Centre of Excellence. Joint funding (MR/KO232331/1) from the British Heart Foundation, Cancer Research UK, Economic and Social Research Council, Medical Research Council, the Welsh Government and the Wellcome Trust, under the auspices of the UK Clinical Research Collaboration, is gratefully acknowledged.

Contact: Hayley Reed, Involving Young People Research Officer, DECIPHer, Cardiff University

Email:  reedhm@cardiff.ac.uk

Tel: 029 2087 9053 or 07881 514874