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Transforming child mental health: co-designing, building and evaluating a digitally enabled, personalised, prevention pathway

Lead Research Organisation: University of Cambridge
Department Name: Psychiatry

Abstract

(written with PPI panel)
Many aspects of a young person's life can affect their mental health(MH), and there is a crisis in our ability to support childhood mental illness. Problems often have to become serious before young people can access Child & Adolescent Mental Health Services(CAMHS). CAMHS are stretched, offering help to only a quarter of those in need, and often intervene late. Early identification and treatment are beneficial, but could swamp services and create even longer waits. Some young people are reluctant to access CAMHS because of stigma (e.g. self-harm). Inequity also limits access (e.g. those experiencing economic hardship or from minority groups). These variations leave many struggling to get help, affecting their health lifelong and their and their families' lives. We need to re-think how CAMHS are delivered.

Using digital tools to make CAMHS fairer and more efficient could help young people get the right treatment sooner. For example, apps or websites could be used to: (1) identify problems early before someone needs intensive treatments, (2) signpost young people to the most useful services for them rather than sending everyone to CAMHS, or (3) help predict who would benefit most from which treatments, so young people get the right treatment first time.

This could be achieved by harnessing the power of 'big data'. Information (data) about a young person's life could help. For example, the risk of serious problems is indicated by an accumulation of factors such as early childhood experiences (e.g. bullying, neglect, racism), the environment (e.g. housing, diet, the amount of green space near home) or physical factors (e.g. genetics, inflammation, brain chemistry). Data like these are already collected from a range of sources such as maternity, health visitors, GP records, schools and social care, but are never brought together.

This information, if brought together, could be used to create digital tools to identify patterns using artificial intelligence (AI). However, there are problems to solve first. We do not know which data are most useful, how best to bring data together securely, or the most effective AI methods. Importantly, we have not got agreement on which information should be used for which purposes. For example, it might be acceptable to use genetic information in a hospital to decide which medication is safest, but maybe not to identify who is at risk of suffering from a problem in the community. We must get this right. In this study, we will access data from a broad range of sources, some of which we will collect and organise in the early stage of this project, and use it to establish the best way to develop digital tools to support CAMHS. We will then work with the public, and experts who work with or have experience of MH problems, to translate AI algorithms into digital tools.

These digital tools must be part of a clinical service that can intervene early. We want to create a new early identification and prevention service and establish what digital tools are needed to make early detection work effectively, safely, and fairly. We will bring together experts who are doing ground-breaking work in academia, industry, and the clinic, with policy makers. We want to turn their attention to solving these problems, together with young people, their carers, and people with lived experience. The people whose data is used should direct the building of these tools and new clinical pathways. We need their help thinking about which data should be used for what purposes, for which people, what should happen when a young person is thought to be developing MH problems, and how to use digital tools to support treatment decisions. In later years we will explore the effectiveness of the early identification and prevention approach, create recommendations for overhauling inefficient systems and develop a template for data-guided, individualised, and timely MH interventions for the future.
 
Description SO far we have identified that linked electronic health records are a feasible way to identifiy childrens mentla health probelms in children with social care contact
Exploitation Route Too early
Sectors Digital/Communication/Information Technologies (including Software)

Healthcare

 
Description We are creating a network of data hubs across the UK that are collating their routinely collected data and utilising it for research.
First Year Of Impact 2025
Sector Digital/Communication/Information Technologies (including Software),Healthcare
Impact Types Policy & public services

 
Description Met with minister for education
Geographic Reach National 
Policy Influence Type Participation in a guidance/advisory committee
URL https://www.csap.cam.ac.uk/network/anna-moore/
 
Description Presented work to shadow minister for innovation and technology
Geographic Reach National 
Policy Influence Type Participation in a guidance/advisory committee
 
Description Mental Health Mission
Amount £350,000 (GBP)
Organisation University of Oxford 
Sector Academic/University
Country United Kingdom
Start 03/2024 
End 03/2027
 
Description Prevention of persistent high levels of depression across adolescence and young adulthood: the role of active ingredients
Amount £40,000 (GBP)
Funding ID 226698/Z/22/Z 
Organisation Wellcome Trust 
Sector Charity/Non Profit
Country United Kingdom
Start 07/2022 
End 03/2023
 
Title OMOP/standardisation of social care data for children 
Description This is the first example of standardisation of children's social care data to OMOP. The approach will be the basis of a national approach. 
Type Of Material Improvements to research infrastructure 
Year Produced 2025 
Provided To Others? Yes  
Impact This enables social care data to be used across regions as well as between health and social care. 
URL http://www.cadre.org.uk
 
Title CADRE 
Description Linked database including paeds data from health, education and social care. Will be available to others in the future. 
Type Of Material Database/Collection of data 
Year Produced 2023 
Provided To Others? Yes  
Impact None yet, its a WIP. 
 
Description Collaboration with charity to develop integrated data resource 
Organisation Anna Freud Centre
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution AFC are partnering with the research team to build an informatics platform integrating health and social care data. This involves a workstream involving members of the public and service users to explore the acceptability of the use of electronic health and care records data. We are also collaborating to create the first general population cohort of children and adolescents for the NIHR BioResource. The PPI team is partially funded by the MRC Adolescent Engagement Award I hold. We provide a link into the research including communication and training.
Collaborator Contribution Helped to recruit a Young Champion Academic leadership of PPI workstream Schools team is helping to identify and liaise with schools to support recruitment.
Impact - active PPI group contributing to research - secured funding for study co-ordinator from NIHR BioResource - it is multidisciplinary (psychiatry, genetics, BRC, health services research, informatics, PPI)
Start Year 2020
 
Description Illumina 
Organisation Illumina Inc.
Department Illumina
Country United Kingdom 
Sector Private 
PI Contribution Contact with Illumina to discuss with them the value of research in child MH genetics.
Collaborator Contribution They are contributing £100k of whole genome sequencing.
Impact UKRI Future Leaers Fellowship
Start Year 2023
 
Description Mental Health Mission 
Organisation University of Manchester
Country United Kingdom 
Sector Academic/University 
PI Contribution We are providing an informatics platform for children's health research
Collaborator Contribution Funding, access to a national network of sites wanting to adopt the platform.
Impact three major cities are adopting CADRE
Start Year 2024
 
Description Microsoft research 
Organisation Microsoft Research
Country Global 
Sector Private 
PI Contribution Collaboration to design digital tools
Collaborator Contribution They are providing me with mentorsip, access to training for team and I, and direct input to project work.
Impact UKRI luture leadership fellowship
Start Year 2023
 
Description Parternship with NIHR BioResource 
Organisation National Institute for Health and Care Research
Department National Institute for Health and Care Research (NIHR) BioResource
Country United Kingdom 
Sector Academic/University 
PI Contribution I have been appointed Clinical Lead of the NIHR Children and Young People's BioResource. I am helping to establish a novel cohort of children and young people to join the BioResource. I have also secured the partnership of a leading national charity (Anna Freud Centre) to support this work. We will be taking a novel approach and recruiting children via schools.
Collaborator Contribution The aim of my work with the BioR is to include genetic data into the linked data resource we are currently building. We will work with them to determine how best to link this data to the linked platform, addressing information governance, technical, security and legal issues.
Impact Creation of a national Expert Working Group, partnership with a leading national charity, commissioning of a schools PPI group and young people's PPI group.
Start Year 2020
 
Description Partnership with Bitfount - start up company that specialises in federated AI 
Organisation Bitfount Ltd
Country United Kingdom 
Sector Private 
PI Contribution We have supported Bitfount to understand what is required to build a Trusted Research environment and how federated analytics is important. We have supported them to understand the 'five safes' of research data. They also have an additional clinical example to include in their portfolio.
Collaborator Contribution Bitfount will provide the capability to carry out privacy preserving federated analytics across a range of TREs. This is a critical functional requirement to enable the external validation of the early identification AI models we are building, as well as providing larger sample sizes.
Impact We have drafted an application to the UKRI/HDRUK DARE sprint program.
Start Year 2021
 
Description Partnership with Community Health Services to creat linked database 
Organisation Cambridgeshire Community Services NHS Trust
Country United Kingdom 
Sector Public 
PI Contribution We have provided them with training to de-identify their data using a validated software (CRATE). We have provided facilitated workshops to support the identification of hte data that is required.
Collaborator Contribution The clinical team and informatics teams are working with us to develop a linked dataset. This has included the clinical lead and informatics leads working closely to: map the databases, identify the datasets that we require, they are undertaking training to enable them to de-identify the data locally, the data will be transferred to us periodically. They are contributing to the work to develop the live linked database.
Impact I will be completing a clinical training post inthe service as a direct result of this collaboration. I also hope to build a clinical service in theri organisation as a direct result of this work.
Start Year 2019
 
Description Partnership with department of Genetics 
Organisation University of Cambridge
Department Department of Genetics
Country United Kingdom 
Sector Academic/University 
PI Contribution We have secured a grant that has led to funding for the department. Providing education in health services structure and related informatics.
Collaborator Contribution They are providing access to a Wellcome Trust Funded informatics platform that we are adapting for use with healthcare data,
Impact We are building the cambridge child health informatics and linked data platform (Cam-CHILD).
Start Year 2020
 
Description Partnership with local authority to create linked database 
Organisation Cambridgeshire County Council
Department Public Health Service; Cambridgeshire County Council
Country United Kingdom 
Sector Public 
PI Contribution We have provided training and support to develop a method of mapping out data required for the linked dataset.
Collaborator Contribution - service, IT and information systems leads are working with us to map out the data requirements for the database. - will pseudonymise data - will extract data for the database and update this periodically - will contribute to governance of subsequent dataset
Impact We have submitted an NIHR application to the 'Unlocking Local Authority Data' call
Start Year 2019
 
Description Partnership with the Department of Engineering 
Organisation University of Cambridge
Department Department of Engineering
Country United Kingdom 
Sector Academic/University 
PI Contribution We have led the applicaiton of the 'Systems Thinking' approach to the development of early identification tools for child MH.
Collaborator Contribution Senior Academic attends all meetings and is leading a workstream on how best to take a systems approach to early identification in adolescent MH.
Impact Submitted and secured an MRC adolescent engagement award.
Start Year 2020
 
Description POdcast about children's mental health 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Talking about what has caused increase in MH problems, and how CADRE and data can help
Year(s) Of Engagement Activity 2025
URL https://www.bennettinstitute.cam.ac.uk/blog/what-is-happening-to-young-peoples-mental-health/
 
Description Podcast about D-CYPHR 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Podcast talking about D-CYPHR and its' benefit for paediatric research, and discussing how to join.
Year(s) Of Engagement Activity 2025
URL https://www.buzzsprout.com/1973533/episodes/16648922-57-i-am-but-more-than-a-refugee-behrouz-boochan...