Call overview and agenda

On 21 January 2021, Professor Paul Matthews and Dr David Owen presented the research plans for the proposed Brain Sciences Theme as part of the Imperial Biomedical Research Centre (BRC) (2022 to 2027). The meeting was attended by members of the Imperial BRC Public Advisory Panel (Panel) and took place via Zoom.

The aim of this particular online session was to:

• Introduce the Brain Sciences Theme's propsed main areas of research
• Q&A
• Facilitate small group discussions exploring the topic further with panel members

 

Summary of Key Insights

This following is a summary of the themes identified in breakout room discussions, more details of which are set out in the full report.

Comments on proposed research areas and on what the application should focus

Panel members were broadly positive about the proposed research areas and noted that as childhood mental health and dementia/Alzheimer’s are much more prevalent (particularly with Covid) and were underserved and underfunded that these should perhaps take priority. Mental health, and in particular children and young people’s mental health, was considered to be a very important area including the impact on children’s education attainment and learning capability and the need to explore their family history. There was support for the use of technology in young people’s mental health research, however it should be co-developed with young people from the outset and schools should be directly involved.  Queries were raised about whether moods could be monitored using technology and that young people may not always be aware of their changing mood and parents, GPs and carers needed to be involved too. Other suggested areas of research included: understanding whether psychiatric disorders are a result of nature or external factors e.g., social pressures; early detection and the role of genetics in schizophrenia; and stroke research due to the link to the Parkinson’s Brain Bank.

Suggestions on how to undertake further consultation with those with lived experience

The Panel suggested that communication and coordination was needed between each research project and in order to integrate public contributors into research teams including keeping them regularly updated. It was recommended that the theme needs to have a culture of researchers genuinely wanting to involve the public including building capacity in public involvement.  A PPIE strategy should be created using an iterative process which needs to be appropriate to how the theme works. It was also recommended that public involvement be included in theme governance and someone in the theme be accountable for PPIE. Other suggestions were to: involve the public early and meaningfully through the research cycle; undertake public involvement appropriate to each research area; and to focus on co-development and co-production with shared power and influence. The Panel also suggested involving carers and family members specifically when patients lack capacityas well as social services for both adults and children. It was considered thatfurther consultations could be undertaken with population groups by involving people with lived experience in each of the research areas including bylinking with contacts’ networks, NHS specialist services and their patient clinical reference groups and online patient groups. It was also suggested that partnering with dementia charities and third sector organisations for the reapplication would be beneficial for all parties.

How we used the insights

This insight report summarising key points from the session was made available to Theme leads and the BRC Executive in order to shape the BRC application. The report was also provided to the Panel members who took part in the involvement activity. A full report on all public involvement activities undertaken in preparation for the BRC application can be found here.

We would like to thank all those members of the public who gave their time and thoughtful insights through these activities, and the researchers who engaged enthusiastically in the process.