Network Data Lab: the young voices shaping our work around children and young people’s mental health care

Last year, the Health Foundation launched the Networked Data Lab (NDL) – a community of data professionals looking to solve the UK’s most pressing health care challenges since COVID-19. Imperial College Health Partners (ICHP), Imperial College London and the Institute of Global Health Innovation were named as one of five NDLs around the UK to carry out data analysis based on local priorities. Health care data is often fragmented, making reliable analysis difficult, but in North West London we have access to Discover-NOW, a depersonalised linked data set covering a diverse population of over 2.5 million. This has been the platform for our research.

The first NDL theme, set by the Health Foundation, was around the impact of COVID-19 on individuals asked to shield based on their clinical histories. As part of this we worked with local community leaders to capture the experiences and research priorities of seldom heard groups. The insights captured helped inform our research questions. For example, as mental health was ranked as one of the top research priorities by community members and healthcare professionals, we selected this as a topic for analysis and looked at the mental health needs of those who were shielding and how those needs had changed during the pandemic.

The involvement of local community members has also shaped the future research priority areas of the programme. Mental health was prioritised as the third most important area by our local community – and in March this year, the Health Foundation announced the second theme would be “inequalities in children and young people’s access to mental health care”.

We know that the the COVID-19 pandemic has had a significant impact on the mental health of children and young people – and this project is an opportunity for us to use the Discover-NOW data set to delve deeper into some of the issues. As with theme one, we wanted to ensure key stakeholders were involved in informing our approach. We therefore contacted local mental health charities and youth groups to advertise an opportunity to bring together young people to discuss their priorities in this space.

In May, we ran an online workshop for 16-25 year olds who live, go to school in or have received care in North West London. 20 young people attended from across 10 boroughs with diverse backgrounds and experiences – 63% identified as having lived experience of a mental health condition, 65% were part of ethnic minority groups and 20% identified as non-binary. In the workshop we covered three broad questions to explore the group’s experiences of mental health and care during this recent period and the areas they most wanted us to research.

Mindful of the personal and emotive topic being discussed, we put measures in place to create a supportive environment where people would feel comfortable contributing:

• We sent information about the session and what was to be discussed prior to the meeting, to set expectations and ask if anyone needed further support.
• Group sizes were kept small (up to 5 in each group).
• We had four experienced facilitators, who had experience of working with children and young people.
• Participants had the option to keep their camera off to protect their identity and we set up a Jamboard (online whiteboard) where people could contribute anonymously.
• We signposted to youth mental health support services in advance and suggested that the young people could get in touch with two of the session facilitators who were Mental Health First Aiders (MHFA).

In order to capture a younger perspective, we also ran a survey on this topic for 11-25 year olds from North West London. This invited people to share their own personal experiences and reflections, as well as asking them to rank the themes that came out of the workshop. We sent the survey through youth leaders connected to the North West London Health and Care Partnership, where children have parental consent to review research projects. School networks and youth groups were also key promotion channels. Overall, 44 young people completed the survey – 91% were aged 11-16, 77% were part of ethnic minority groups and 41% had personal experience of mental health difficulties.

In the survey 23 out of 44 people thought ‘Has the number of young people presenting with self-harm and/or suicidal thoughts increased?’ was an important topic – this was the top priority, followed by ‘Are more young people showing mental health symptoms and which conditions?’ (selected by 20 respondents). Other areas which were identified as being important included ‘Has mental health of young people got worse and why?’ (16/44), ‘Are some GPs sending more young people for further support?’ (14/44) and ‘Has the move between child to adult services been more difficult?’ (13/44).

So far, we have already captured some invaluable insights from children and young people which have influenced the priority areas for our analysis. To build on this further we will also be recruiting a Young People’s Advisory Group to ensure the perspective of young people continues to be of influence as the project progresses. Members will be recruited from our workshop attendees and will be involved in reviewing our initial findings and shaping our communications and messaging.

In parallel to this activity, we have also established a professional reference group, including consultant pediatricians, consultant psychiatrists, mental health researchers and representatives from community mental health trusts. This group have already supported by reviewing the emerging themes, sharing existing patient insight, and by helping us to frame our survey questions to ensure they were appropriate for a youth audience. Similarly to the Young People’s Advisory Group, they will continue to act as a sounding board as this project progresses.

Through engaging with key stakeholders from the outset, we can have greater confidence that we are focusing on areas that will have an impact on local service provision and those who access it.

The insights from this work will help to inform local commissioners on the current state of mental health services in terms of:

• Access to services.
• Severity of conditions which young people are presenting with.
• How well children and young people transition to adult mental health services.

These details will support them to adapt current services and design new services which work more effectively during and following the COVID-19 pandemic.

We are still looking for local authority and school representatives to join our Professional Reference Group. If you are interested in getting involved and would like to find out more, please contact: Sadie.myhill@imperialcollegehealthpartners.com