Virtual YPAG session March 2021
Written by Vanessa Bennett
Reviewed and edited by Caitlin Brookes and Amelia Crook (NeurOX YPAG members)
This was an opportunity for our remaining ‘long-standing’ members to reflect on their involvement and achievements since the start of the BeGOOD Citizens EIE programme in 2015. This programme has enabled young people to explore different methods to capture and amplify insights of young people on psychological, social and moral issues relating to prevention and intervention of mental ill-health.
Our newer cohort of young researchers, who started their journey in 2019 (along with myself!), brought a fresh approach and broadened our experiences to help set the context and interpret the findings. We held two sessions:
Session 1: Understanding how young people want to communicate about their mental health
In this breakout session, young researchers shared their thoughts on the nuances of communication with young people around their mental health, and how they define identities. We were eager that they felt able to openly explore and share their knowledge and apply their experiences when critically evaluating the five of the Citizens EIE BeGOOD research methodologies in the second session. In the adult-free zones we feel that young people really entered into deeper discussion around their preferences, stigmas and how they want to communicate more freely about mental health.
You can read more about their perspectives here.
Session 2: Introducing ‘design bioethics’ and BeGOOD Citizen EIE projects
This session set the scene for newer members about the methodology driving this research grant. David Lyreskog, one of the BeGOOD Post Doc researchers, neatly summarised the concept of ‘Design Bioethics’ in this research setting, and how this has driven the suite of BeGOOD Citizen’s EIE research projects. In a nutshell, this is…
…design and use of purpose-built, engineered tools for bioethics (ethical issues in biology or medicine) research, education and engagement applied to mental health contexts.
The BeGOOD Citizens EIE research projects…
| Tracing tomorrow | An innovative game for mobile and web, to investigate young people’s attitudes towards data tracking technologies for Mental Health. A parallel study, to compare how playing a game to report preferences differs from more traditional methodologies |
| Digital diaries | A study that explored young people’s moral experiences in everyday life using innovative digital diary methodology |
| Grandchildren of Alzheimer’s Patients: Illness Representations and Attitudes towards Genetic Testing | A study involving grandchildren of Alzheimer’s patients to explore their understanding of Alzheimer’s and attitudes towards predictive genetic testing |
| Can your phone be your therapist? | A collaboration with the young people’s advisory group to develop minimum ethical guidelines for automated conversational agents in mental health support. The views of this study are shared via a BBC Tomorrow’s World Clip |
| What lies ahead? | A collaborative project to explore young people’s attitudes towards predictive testing in mental health |
Young people’s reflections on BeGOOD Citizen Early Intervention Ethics (EIE) research projects
As we approach the end of this research grant, we wanted to collate all this research and listen to the young researcher’s views on what they feel is most important and what is likely to have the greatest impact for others including those with different experiences. Based on some of the other equality, diversity and inclusion work they have been involved in, the young researchers also considered how some of the methods could be used or adapted to include young people with different backgrounds, identities, experiences and mental health challenges to encourage young people to be involved in change in the future.
The young researchers noted some interesting points about the methodology in their breakout groups reflecting many of the themes from the first session. The intention is to take these thoughts a little further in our next session in the summer to take a closer look at the ‘data’ and findings across all these Citizens EIE projects with the young researchers to identify the cross-cutting themes.
Look out for an update and research in Autumn 2021
To find out more about the NeurOX YPAG and the involvement work we’ve been doing together, take a look here:
https://oxneurosec.com/projects/begood/
https://oxfordhealthbrc.nihr.ac.uk/patient-and-public-involvement/young-peoples-involvement/
These are the virtual projects members of the NeurOX YPAG have been involved in over the past year:
https://oxfordhealthbrc.nihr.ac.uk/celebrating-a-year-of-involving-young-people-with-research/
