Evidence gathering activities

The Council would like to thank everyone who contributed to our various evidence gathering activities for this project.

Stakeholder group

At its first meeting, the Working Party decided to establish a Stakeholder Group of young people and parents. Some of these young people had direct experience of research participation, whereas others had none. The members of this group met twice, once at the outset of the project and later to assess the direction of the project. The group also gave feedback on the Working Party’s thinking and writing at various stages of the project.

Call for evidence

The Council’s call for evidence on children’s involvement in clinical research took two forms, the first was aimed at professional organisations, researchers and others with a specific interest in this topic. A version of this consultation was distributed globally with help from the Global Health Reviewers‘ community and KEMRI network. The second part was made up of two online surveys, one aimed at parents and one aimed at young people.

Factfinding meetings

The Working Party held a series of ‘fact-finding’ meetings as part of its work. A wide range of people were invited to give presentations and discuss their views and experiences, including on:

  • Making research decisions – who decides and how?
  • Setting the paediatric research agenda
  • The role of clinicians and researchers
  • The role of ethical review
  • Drivers of research
  • Vulnerability
  • Risk

School and community consultation in Kilifi, Kenya

With the support of our Working Party members based in Kenya, we were able to draw on the views of school children and community representatives in Kilifi, Kenya. Download a report of this consultation.

School-based activities in the UK

To hear the views of children and young people without direct experience of clinical research, the Working Party also ran two school-based projects:

Previous work

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Nuffield Council on Bioethics
28 Bedford Square
London
WC1B 3JS

bioethics@nuffieldbioethics.org

+44 (0)20 7681 9619

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