Young adults collaborating with researchers to make sense out of the pandemic
Annie Keane, from patient involvement group Vocal, and Alma Jbeili, a teenage public contributor, write about how an innovative comic project Planet DIVOC-91 aims to address the lack of focus on young people’s concerns and experiences in the wider public discussions about the COVID-19 pandemic.
The Planet DIVOC-91 comic project enables 16-25-year-olds, researchers and creatives to work together to explore the issues and the science of a pandemic in ways that connect with the interests of a young adult audience. The comic is a character-driven narrative, following the adventures of siblings Sanda and Champo, who have been zapped (evacuated) from earth to another planet. The pair are attempting to solve the mystery of a horrible virus that is affecting the planet’s inhabitants - in part reflecting the COVID-19 world we live in now and its impact on research. There are now six chapters of the comic online with three more in development. To date it’s had over 15,000 views.
Young people collaborating globally
The comic is a global collaborative effort, involving young adults in the UK, India and South Africa, acclaimed comic creators and researchers from a wide range of disciplines. So far, the participants have interviewed over 30 experts, including the UK’s Chief Scientific Advisor Sir Patrick Vallance, and Professor Vijay Raghavan, Principal Scientific Advisor to the Government of India.
As well as hearing from researchers, participants are speaking up about what’s important to them. Young adults from the UK group shared their experiences at the Academy of Medical Sciences Fellows COVID Advisory Group and at an Independent SAGE meeting which was broadcast live online and has, to date, been viewed over 13,000 times.
The key themes about the pandemic that are most important for the young people participating in this project are mental health, misinformation, equity, and stigma. After the last chapter of the comic is published in April, the participants want to make sure they have a say in the decisions that affect them.
Involving young adults to improve future research
Alma, aged 17, adds: “My experience being part of this group has been very rewarding on many levels. In terms of having my voice heard, I felt like this project has given me so many opportunities to do so which have really helped raise my confidence in myself and my ideas and to be unapologetically me.
“What I want to see change as a result of this project is for policy makers and researchers to take into account our perspectives when deciding on implementing certain policies and to use our ideas to improve and accentuate research in the future. Moreover, personally I want policymakers to communicate with us openly and take into account our views in regards to the regulations that they put in place on matters that directly affect us. I want to see communication platforms being developed which facilitates this discussion and to actively engage with young people and find out what they really need and put in place measures to support us and our needs.”
Young adults stand to benefit, or lose, from the decisions and policies that are being made now. Planet DIVOC-91 demonstrates that young people want to have a say about research and that they gain benefits from it too.
The NIHR defines patient and public involvement (PPI) in research as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. The NIHR is a member of the Planet DIVOC-91 Steering Group and work is currently underway to identify and create new opportunities to work directly with young people in the future, in order to gain the perspectives of younger people directly. The first step in this is to increase representation of children and young people in the pool of reviewers.
Read the Planet DIVOC-91 comic here on webtoon and follow and share the project by following @PlanetDivoc91 on Twitter and Instagram.
Annie Keane is a Manager at Vocal
Alma Jebeili is a member of Voice Up, (Manchester’s Young Person’s Research Advisory Group) and takes part in Planet DIVOC-91 project.
Photo credit: Hannah Berry
Planet DIVOC-91 has been funded by NIHR Manchester Biomedical Research Centre, the NIHR Manchester Clinical Research Facility, The Academy of Medical Sciences, The Science and Technology Facilities Council, Royal Society of Chemistry and The University of Manchester through the Wellcome Institutional Strategic Support Fund award. The global reach of the project has been possible by funding from Wellcome.
The NIHR is a member of the Planet DIVOC-91 Steering Group and is identifying new opportunities to work with young people in research - including as public reviewers.
The project is managed by Vocal and Wowbagger Productions in the UK, with project teams working directly with young adults in India (DBT/Wellcome Trust India Alliance), South Africa (Interfer) and the UK. Anita Shervington (BLAST Fest) is working with the young adults to explore how they can harness their personal and collective influencing power.
The views and opinions expressed in this blog are those of the authors and do not necessarily reflect those of the NIHR or the Department of Health and Social Care.