Using national-level linked administrative data to explore prevalence of mental health concerns and characteristics of mental health services received by children in State care in England before, during and after the COVID-19 pandemic.
University of Bristol · Academic
In term In term in the September 2026 edition: the latest version runs to 26 October 2026.
- Reference
- DARS-NIC-382333-M5J9W
- Current version
- v2.3
- Term of current version
- 19 June 2024 to 26 October 2026
- Start date
- 27 October 2022
- Data controller
- Sole Data Controller
- Commercial purposes
- No
- Sublicensing
- No
- Files released to date
- 167
Why the data was released
Objective for processing
The University of Bristol requires access to NHS England data for the purpose of the following research project: "Using national-level linked administrative data to explore prevalence of mental health concerns and characteristics of mental health services received by children in State care in England before, during and after the COVID-19 pandemic".
Background
Children in State care constitute a vulnerable group of children in society. At any given time in England, there are around 80,000 children being looked after by the State. The majority of these children are taken into State care due to experiences of severe maltreatment such as abuse or neglect. Research studies indicate that mental health concerns in this vulnerable child population are high with 50% of children in State care having a diagnosable mental health concern, when compared to 12% of children in the general population. Despite this high prevalence of mental health concerns, there is no established evidence base on the characteristics and vulnerabilities of children in care who are referred to mental health services (MHS) and their prognosis and pathways through the MHS system in England, including the impact of the COVID-19 pandemic. This has been flagged by the Children’s commissioner of England and the Education Committee as a serious concern that needs to be addressed.
Objectives
The primary objective of this project is to fill this gap in knowledge and to establish new and timely information on the prevalence of mental health concerns in the population of children in care; provision of MHS; and children’s prognosis and pathways through the MHS compared with children in the general population before, during and after the COVID-19 pandemic. A secondary objective of this project, to be pursued at such time as the required data from the Department for Education (DfE) becomes available, is to deliver a novel linkage which will demonstrate potential for combining NHS health records with routine social care records. Although children in care who have referrals to MHS and who are in receipt of MHS are recorded by the NHS, this data is not routinely linked back to their care or education records.
The project aims to answer these research questions, with an emphasis on exploring any change before/during/after the Covid-19 pandemic:
1. What are the pathways to mental health referral, treatment, discharge and re-referral for children in care compared with the children and young people in the general population?
2. What is the prevalence of the different mental health conditions of children in care referred to MHS and how does this compare with the children and young people in the general population?
3. Is there a difference in the MHS provision and outcomes for children in care when compared with children in the general population?
4. Do the referrals and MHS provision differ for specific groups of children in care? (e.g. by ethnicity/ age/ gender/ disability/ type of placement/ legal status/ previous experience of maltreatment/ number of placements in care)
5. What are the characteristics of children in care in England who are in receipt of MHS and are they different to children in care who are not in receipt of MHS?
6. Is there any variation between local authorities on the mental health service referrals and outcomes for children in care?
7. Controlling for other factors, what is the association between children’s yearly collected scores on the Strengths and Difficulties Questionnaire (SDQ) collected by the DfE and their referrals to MHS?
8. What are the characteristics and preceding care experiences of children in care who are admitted to hospitals for mental health related concerns and children in care who are referred to mental health services?
9. How useful is the newly linked social care-education-mental health data in exploring the mental health service provision, prognosis and pathways of children in care through the MHS provision in England?
The project is planned to be carried out in two phases. This data sharing agreement covers the first phase, wherein mental health episodes of school-aged children will be identified from (unlinked) NHS England data. It is intended that a subsequent amendment to this agreement will be made to cover the second phase, wherein NHS England data will be linked with data from the DfE.
Data Requirements
The study design is an analysis of pseudonymised, individual-level data from national, population-level data sources. Individual-level data is required to track individual trajectories over time/ across datasets. It is important not to narrow the sampling frame geographically in order to capture a sufficient number of children in care to provide enough statistical power for analyses and to obtain a detailed picture of their mental health prognoses and service provisions. National data is also requested to enable analyses of local authority level variation. There are no alternative, less intrusive ways of achieving the purpose.
Sample
The data subjects for this project will be any children or young people who could have been a pupil in England; in key stage 1-5 education; at any time since 1st April 2015; and have had a mental health episode recorded during their childhood (up to the age of 18). Baseline data for the analyses will be calculated with data on all children, who were not in care; and who could have been a pupil in England; in key stage 1-5 education; at any time since 1st April 2015; and have had a mental health episode recorded during their childhood (up to the age of 18).
Datasets
In Phase 1, the research team request access to all available current and historical hospital and mental health episodes, up to the age of 18 (where possible to define this within the constraints of the applicable datasets and not excessively burdensome), for all children and young people who had been a pupil in England since 1st April 2015 from the following NHS England datasets:
• Mental Health Services Dataset (MHSDS): This national dataset, centrally collated and held by NHS England, includes person-based information on all individuals in England who are in contact with the Mental Health Services. Data on children and young people have been available in the MHSDS since 1st April 2016. The information contained in this dataset includes, for example, reason for referral, mental health legal status, assessment outcomes, disability, primary/secondary diagnoses, type of treatment/therapy programme and waiting times. It also identifies children and young people looked after by the State. Children and Young People’s Improving Access to Psychological Therapies (CYP IAPT) data form part of the MHSDS. This is a programme of evidenced-based psychological therapies to provide emotional and wellbeing support to children and young people in England through outpatient clinics in the community. IAPT services are characterized by routine outcome monitoring, which will be used for analyses in this research.
• Hospital Episode Statistics (HES): HES is a database containing details of all admissions, A&E attendances, and outpatient appointments at NHS hospitals in England. Important mental health information can be found within the HES centralised secondary care records. The University of Bristol request data from Admitted Patient Care (APC) (e.g., recording admissions into psychiatric care); Accident & Emergency (A&E)/ the Emergency Care Data Set (ECDS) (e.g. presenting for care following self-harming or overdose); and Outpatients (e.g. follow-up outpatient treatments for mental health). HES APC and HES OP data are being requested from 2003/04 to enable capture of historical mental health linked episodes of care linked to children and young people who have been pupils in England since 1st April 2015. With the same justification, HES A&E data are being requested from 2007/08 as the earliest available data from this domain, to enable the same type of longitudinal analyses as for the HES APC and HES OP data.
The MHSDS includes a variable which flags ‘children looked after by the State’ and HES includes a ‘discharge destination’ field, which flag children going back into placements in State care. Therefore, the unlinked and pseudonymised record level data from MHSDS and HES (including ECDS) data being requested from NHS England in this initial Data Sharing Agreement will enable the University of Bristol to answer research questions 1, 2, 3, 9 and to partially answer research question 4.
For the intended phase 2, the University of Bristol proposes to link the NHS’s national dataset on mental health services (MHSDS) and hospital episode statistics (HES) data with administrative datasets held by the Department for Education (DfE) on all pupils (NPD data) and children in State care (SSDA903 data). This is planned to enable answering of research questions 4, 5,7, 8 and 9.
Data linkage and access
Phase 1 of the research involves linkage between NHS’ MHSDS and HES datasets. No external data will be linked in this phase.
Data minimisation
The research team’s approach to minimisation is based on two key approaches: 1) that only variables necessary for the investigation are being requested; and 2) only the records of relevant health events are being requested where possible and not excessively burdensome. The researchers believe there is no less intrusive manner to achieve the research than the use of pre-existing administrative data.
In phase 1, HES APC data is being filtered by diagnosis code, and HES OP is being filtered by treatment function code in order to retrieve records related to mental health admissions. As HES OP only has diagnosis codes populated for ~5% of records, this would be an inappropriate method by which to filter the data. MHSDS will only cover mental health-related episodes, and therefore does not require further filtering by diagnosis. All HES A&E and ECDS episodes are required, as the research is examining the number of emergency admission episodes which may represent an opportunity for a mental health referral. Vulnerable children tend to use A&E services in the first instance rather than their GP. Where vulnerable children relocate between carers, there is value in reviewing their behaviour in regard to accessing health care and mental health care during periods when in care and periods when they are not. In addition, HES A&E does not contain any single variable which can be filtered on to classify an episode as pertaining to mental health. A combination of variables must be used to make this inference.
The University of Bristol's request is minimised to include only children and young people who have had a mental health episode during their childhood (where possible to define this within the constraints of the applicable datasets). The request cannot be minimised further due to statistical power and sample diversity issues. The research aims to compare the mental health burden in children looked after by the State versus the wider population. It will investigate explanatory factors behind differences and whether they differ for subgroups of children (for e.g., by gender, ethnicity, mental illness, local authority). To draw sufficiently heterogeneous controls (when selected at random) is unlikely unless using a large ratio of children and young people in State care to those in the general population. To use a smaller control population would add considerable complexity, potential for bias, and resource implications for limited minimisation benefits. Given the very low prevalence of some mental illnesses (for example, the prevalence of panic disorder in the population is 0.6%), data on all children and young people referred to mental health services is required to enable enough power for analyses of these sub-groups. Access to data on all children and young people referred to mental health services is therefore believed to be proportionate to the aims of this project.
Data needs to be retained for all children and young people referred in order to track re-referrals of those who were not diagnosed/ put on treatment pathways before (indicating a potentially high risk group, with a requirement for earlier intervention). The University of Bristol will perform any final filtering of the NHS England datasets to ensure that no relevant episodes for the analysis are lost needlessly. Any data surplus to study requirements will be destroyed.
Legal Bases
The University of Bristol’s legal basis to process this data is under Article 6(1)(e) of the GDPR because the processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller. The research is in the public interest as it will provide a new evidence base on the mental health of a most vulnerable group of children in the population to enable better service provision and patient care. The University of Bristol’s legal basis for processing special categories of data is Article 9(2)(j) – scientific, historical research purposes or statistical purposes. The processing is carried out in accordance with Article 89(1) of the UK GDPR and is in the public interest.
Organisations
The University of Bristol is the sole data controller for this project, who also process the data.
This research project has a study advisory group who help to interpret the small numbers suppressed results from the analyses, review reports and provide advice on how the results can feed back into policy and practice. The advisory group contains members from the NHS (a designated nurse for looked after children), DfE, charities and academic institutions.
NHS England will provide pseudonymised health data directly to the Bristol Medical School eVM (encapsulated virtual machine) in phase 1. The eVM is a secure research environment. All statistical output created will also be checked by the eVM team (the eVM team are all substantive employees of the University of Bristol and are accredited to Office for National Statistics (ONS) standards to check data releases) for disclosure before being released to the research team. There will be no attempt made to re-identify individuals within the dataset.
The project is funded by the Nuffield Foundation.
None of the above organisations are involved in determining the purpose or the means of the data processing and are not considered joint data controllers. Only the University of Bristol will process NHS England data under this Agreement.
Processing activities
In the first phase of the project, covered by this Data Sharing Agreement, NHS England will flow pseudonymised record-level Hospital Episode Statistics (HES), Emergency Care Data Set (ECDS) and Mental Health Services Data Set (MHSDS) data covering school-aged children to the Bristol Medical School eVM (encapsulated virtual machine), a secure research environment.
There will be no subsequent flows of data. All data analysis by the University of Bristol will be carried out on the pseudonymised datasets held in the Bristol Medical School eVM. Where the University of Bristol identify any data that is surplus to the project purposes, this will be destroyed as soon as possible.
First, a missing data analysis will be carried out to explore the best method to handle missing data in the linked dataset. Second, statistical analyses will be conducted to explore the differences between children in care and the general population group in relation to the research questions. The analyses will then be extended to explore if differences exist between local authorities (LAs). Modelling techniques will be used to establish the risk of referral/re-referral to mental health services for children in care, compared with children in the general population; and to explore whether children's age, such as being a teenager, has any influence on mental health referrals and outcomes.
In the first phase of the project, NHS England data will not be linked to any other data. In the second phase of the project – to be covered by a revision to this Data Sharing Agreement – it is intended that NHS England data will be linked to pseudonymised Department for Education (DfE) data using a common pseudonymised identifier, as described in ‘Objectives for Processing’.
In order to access data in the Bristol Medical School eVM, all researchers have gone through the ONS accreditation process and hold ‘basic/enhanced disclosure’ certificates that are no more than 2 years old. All statistical output created will also be checked by the eVM team for disclosure before being released to the research team and there will be no attempt made to re-identify individuals within the dataset.
The output will be based on aggregates, with the local authorities (LA) as the smallest geography for reporting. The output of all analyses using administrative data (such as tables and figures) will be checked by the senior research associate and the principal investigator for disclosure risk and numbers smaller than 10 will be suppressed before publication.
The data will be accessed at a secure setting of the Bristol Medical School eVM or remotely via an encrypted link. Only the research team will have access to the data files. All data processing will be carried out by substantive employees of the data processor(s) or data controller(s). The project principal and co-investigators have existing ONS approved researcher status and can facilitate certification for new members of staff.
Researchers involved in this project have taken the extended Medical Research Council training on the Data Protection Act 2018 and research confidentiality, as well as University of Bristol training on the Data Protection Act 2018 and on the General Data Protection Regulations (GDPR). All researchers requesting data access work in a professional research organisation which operates to ISO27001 standards. There is specialist research governance training which is mandatory to all staff and experts to help with guidance and training.
Expected output
To enable the conversion of the results into practicable actions, the results of the study will be communicated to a number of stakeholders including; (1) Policy makers; (2) Practitioners and service providers and; (3) Third sector organisations such as charities and organisations campaigning for children’s rights and better service provision for children in care.
The research already benefits from an advisory group with representation from all of these sectors. The advisory group comprises the following organisations:
Care Leaver's Association, NHS, CoramBAAF, Anna Freud Centre (children’s mental health charity), Children’s Rights Advocacy Service, Thinking Allowed (children and adolescent mental health service for children looked after or adopted), BECOME (the leading national charity for children and young people in care and young care leavers), Department for Education, University of York, University College London and the University of Oxford.
Planned outputs:
• Three interim reports, final report and another two separate briefing papers, addressing the main research questions.
• The project website will provide information on the study, research outputs and links to stakeholders. The project webpage hosted by the Nuffield Foundation (https://www.nuffieldfoundation.org/project/mental-health-service-provision-children-in-state-care-england) will provide information on the study and publish all project reports when they become available.
• At least three academic papers addressing the research questions intend to be submitted to leading journals (such as Child Development, the British Medical Journal, Journal of Child Psychology and Psychiatry, Child Abuse and Neglect, European Journal of Child & Adolescent Psychiatry, and Developmental Psychopathology).
• Syntax/code will be deposited at the UK Data Service, to enable future use by other researchers.
• Mental health of children and the impact of COVID-19 is a topical issue. The study is expected to be publicised through press releases, policy blogs and briefing papers in collaboration with the University of Bristol press office, Nuffield Foundation press office and Policy Bristol. The results of the recently concluded Economic and Social Research Council funded study led by the principal investigator (PI) were covered by numerous national media outlets (e.g. The Independent, The Guardian, Community Care, Children and Young People Now, The Conversation, LBC Radio).
• The study output will also be shared with social workers and other practitioners via the British Association for Adoption and Fostering (the PI sits on the research advisory group of CoramBAAF - an independent membership organisation for professionals, foster carers and adopters, and anyone else working with or looking after children in or from care, or adults who have been affected by adoption), through the ‘Research in Practice’ network, and via other publications targeted at practitioners, such as ‘Community Care’ and ‘Children and Young People Now’.
• Register the study at the Parliamentary Office of Science and Technology (https://post.parliament.uk/contributing-to-a-postnote-as-an-expert/), which creates briefing notes for parliamentarians on key subject areas. Academics and subject experts are able to suggest policy relevant topic areas to the Parliamentary Office of Science and Technology team.
• Lobby parliamentarians for policy changes through stakeholders and involvement in All Party Parliamentary Groups (APPGs) on abused and neglected children; looked after children and care leavers.
• Joint conference with stakeholders.
• The Children’s Commissioner will be provided a copy of the study outputs.
Access to the data is strictly controlled by cyber and physical security by the UoB IT department. All statistical outputs will be checked by the UoB team for disclosure. All results will be presented as aggregated data with small number counts suppressed in line with the HES Analysis guide.
Funding is in place for this project until December 2023 by when the results and papers are expected to be completed and available for public dissemination.
Update under v2:
Funding is in place for this project until December 2025. The outputs have not yet been published as as the researchers are still processing/analysing the data received.
Expected measurable benefits
It is a priority of government to understand how COVID-19 has had a disproportionate effect on the more vulnerable populations, specifically children in state care with a need for mental health services. The project report and linked academic publications are expected to provide new evidence to address these government and the Scientific Advisory Group for Emergencies (SAGE) research priorities involving vulnerable children, particularly in relation to the COVID-19 pandemic : SAGE priority area - RQ32 (Understanding vulnerable patients: How are underlying conditions defined, and what is the impact of infection on a range of outcomes, and what are the benefits of 'shielding' and other preventive interventions? AND Linked question: COVID-19 Risk prediction (Relevant to “How do we best understand and protect vulnerable populations?”) and RQ62 (How has the delivery of primary care to vulnerable patient groups changed during the NHS response to the COVID-19 pandemic?).
The ultimate beneficiaries of this research are expected to be children in State care as identification of characteristics of the groups of children most at risk can facilitate preventive work with the high-risk groups. To enable this conversion of the results into practicable actions and policy changes, the results of the study will be communicated to a number of stakeholders including; (1) Policy makers (e.g. Department for Education, Department of Health and Social Care, Parliamentarians); (2) Practitioners and service providers (e.g. Directors of Children’s Services, social workers, Child and Adolescent Mental Health Service (CAMHS) practitioners, GPs; local authority (LA) managers, designated nurses, medical advisers for looked after children, psychiatrists, psychologists, virtual school heads, school counsellors) and; (3) Third sector organisations such as charities and organisations campaigning for children’s rights and better service provision for children in care (e.g. Children’s Commissioner, NSPCC).The National Clinical Advisor of the NHS England Children and Young People’s Mental Health programme has asked to be kept informed of the developments from this project.
The information generated from this research is hoped to provide a new evidence base on the mental health of children in care and enable policy makers, practitioners and other organisations who champion children’s mental health to better inform policy formation, policy implementation and effective resource allocation to improve the mental health standards of children in care, who will be the ultimate beneficiaries of this research. The research output, in terms of identifying the groups of children most at risk for mental health service provision is anticipated to be useful for social work decision making. It is also hoped to benefit looked after children’s nurses, medical advisers, GPs, Child and Adolescent Mental Health Service (CAMHS) teams, Children and Family Court Advisory and Support Service (CAFCASS) and educational services in terms of signposting children who may be most in need of their support.
Monitoring impact and measuring change:
In the short-term: Google analytic reports will be used to measure web traffic and downloads; monitoring and tracking email requests to the research team; press coverage; and social media take-up.
In the medium to long-term: Mentions in parliament; changes to local/national-level policies and practices; continued use of Google analytic reports.
Benefits reported so far
There are no yielded benefits to date as the researchers are still processing/analysing the data received. The data was received in July 2023 and there are over 1 million individual-level records.
Datasets on the current version
Legal basis for provision: Health and Social Care Act 2012 – s261(2)(a)
| Dataset | Type of data | Sensitivity | Frequency | Confidential data |
|---|---|---|---|---|
| Emergency Care Data Set (ECDS) | Anonymised - ICO Code Compliant | Sensitive | One-Off | Does not include the flow of confidential data |
| Hospital Episode Statistics Accident and Emergency (HES A and E) | Anonymised - ICO Code Compliant | Non-Sensitive | One-Off | Does not include the flow of confidential data |
| Hospital Episode Statistics Admitted Patient Care (HES APC) | Anonymised - ICO Code Compliant | Non-Sensitive | One-Off | Does not include the flow of confidential data |
| Hospital Episode Statistics Outpatients (HES OP) | Anonymised - ICO Code Compliant | Non-Sensitive | One-Off | Does not include the flow of confidential data |
| Mental Health Services Data Set (MHSDS) | Anonymised - ICO Code Compliant | Sensitive | One-Off | Does not include the flow of confidential data |
Files released
Files released counts only files released externally by DARS. Access granted in NHS England's own systems, such as its Secure Data Environment, is not included.
Patient opt-outs were not applied to any of the 167 files released under this agreement, across every version. About opt-outs
No files recorded as released under the current version. 167 were released under earlier versions, shown in the version history.
Version history
The register lists each renewal of this agreement as a separate row. This site has 3 versions.
DARS-NIC-382333-M5J9W-v2.3 19 June 2024 to 26 October 2026
- Title
- Using national-level linked administrative data to explore prevalence of mental health concerns and characteristics of mental health services received by children in State care in England before, during and after the COVID-19 pandemic.
- Commercial
- No
- Sublicensing
- No
- Datasets
- 5
- Files released
- 0
Datasets: Emergency Care Data Set (ECDS); Hospital Episode Statistics Accident and Emergency (HES A and E); Hospital Episode Statistics Admitted Patient Care (HES APC); Hospital Episode Statistics Outpatients (HES OP); Mental Health Services Data Set (MHSDS)
What changed from DARS-NIC-382333-M5J9W-v1.3
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Start date | 2024-06-19 | |
| End date | 2026-10-26 |
Expected output
[16 paragraphs unchanged] Update under v2: Funding is in place for this project until December 2025. The outputs have not yet been published as as the researchers are still processing/analysing the data received.
Benefits reported
Not stated in the previous version; added here.
There are no yielded benefits to date as the researchers are still processing/analysing the data received. The data was received in July 2023 and there are over 1 million individual-level records.
Changed only in punctuation, spacing or capitalisation: Objective for processing.
Unchanged: Processing activities, Expected measurable benefits.
DARS-NIC-382333-M5J9W-v1.3 9 May 2023 to 26 October 2024
- Title
- Using national-level linked administrative data to explore prevalence of mental health concerns and characteristics of mental health services received by children in State care in England before, during and after the COVID-19 pandemic.
- Commercial
- No
- Sublicensing
- No
- Datasets
- 5
- Files released
- 116
Datasets: Emergency Care Data Set (ECDS); Hospital Episode Statistics Accident and Emergency (HES A and E); Hospital Episode Statistics Admitted Patient Care (HES APC); Hospital Episode Statistics Outpatients (HES OP); Mental Health Services Data Set (MHSDS)
What changed from DARS-NIC-382333-M5J9W-v0.7
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Start date | 2023-05-09 | |
| Emergency Care Data Set (ECDS): legal basis | Health and Social Care Act 2012 – s261(2)(a) | |
| Hospital Episode Statistics Accident and Emergency (HES A and E): legal basis | Health and Social Care Act 2012 – s261(2)(a) | |
| Hospital Episode Statistics Admitted Patient Care (HES APC): legal basis | Health and Social Care Act 2012 – s261(2)(a) | |
| Hospital Episode Statistics Outpatients (HES OP): legal basis | Health and Social Care Act 2012 – s261(2)(a) | |
| Mental Health Services Data Set (MHSDS): legal basis | Health and Social Care Act 2012 – s261(2)(a) |
Objective for processing
The University of Bristol requires access to NHS
Digital
England
data for the purpose of the following research project: "Using national-level linked
[18 words unchanged]
in State care in England before, during and after the COVID-19 pandemic".
[14 paragraphs unchanged]
The project is planned to be carried out in two phases. This
[8 words unchanged]
mental health episodes of school-aged children will be identified from (unlinked) NHS
Digital
England
data. It is intended that a subsequent amendment to this agreement will be made to cover the second phase, wherein NHS
Digital
England
data will be linked with data from the DfE.
[3 paragraphs unchanged]
The data subjects for this project will be any children or young
[82 words unchanged]
health episode recorded during their childhood (up to the age of 18).
This covers children born between 1997 and 2017.
[1 paragraph unchanged]
In Phase 1, the research team request access to all available current and historical hospital and mental health episodes, up to the age of
18,
18 (where possible to define this within the constraints of the applicable datasets and not excessively burdensome),
for all children and young people who had been a pupil in England since 1st April 2015 from the following NHS
Digital
England
datasets:
• Mental Health Services Dataset (MHSDS): This national dataset, centrally collated and held by NHS
Digital,
England,
includes person-based information on all individuals in England who are in contact
[110 words unchanged]
routine outcome monitoring, which will be used for analyses in this research.
[1 paragraph unchanged]
The MHSDS includes a variable which flags ‘children looked after by the
[25 words unchanged]
data from MHSDS and HES (including ECDS) data being requested from NHS
Digital
England
in this initial Data Sharing Agreement will enable the University of Bristol to answer research questions 1, 2, 3, 9 and to partially answer research question 4.
[4 paragraphs unchanged]
The research team’s approach to minimisation is based on two key approaches:
[12 words unchanged]
2) only the records of relevant health events are being requested where
possible.
possible and not excessively burdensome.
The researchers believe there is no less intrusive manner to achieve the research than the use of pre-existing administrative data.
[1 paragraph unchanged]
The University of Bristol's request is minimised to include only children and young people who have had a mental health episode during their
childhood.
childhood (where possible to define this within the constraints of the applicable datasets).
The request cannot be minimised further due to statistical power and sample
[154 words unchanged]
is therefore believed to be proportionate to the aims of this project.
Data needs to be retained for all children and young people referred
[28 words unchanged]
The University of Bristol will perform any final filtering of the NHS
Digital
England
datasets to ensure that no relevant episodes for the analysis are lost needlessly. Any data surplus to study requirements will be destroyed.
[5 paragraphs unchanged]
NHS
Digital
England
will provide pseudonymised health data directly to the Bristol Medical School eVM
[60 words unchanged]
There will be no attempt made to re-identify individuals within the dataset.
[1 paragraph unchanged]
None of the above organisations are involved in determining the purpose or
[9 words unchanged]
considered joint data controllers. Only the University of Bristol will process NHS
Digital
England
data under this Agreement.
Processing activities
In the first phase of the project, covered by this Data Sharing Agreement, NHS
Digital
England
will flow pseudonymised record-level Hospital Episode Statistics (HES), Emergency Care Data Set
[13 words unchanged]
the Bristol Medical School eVM (encapsulated virtual machine), a secure research environment.
There will be no subsequent flows of data. All data analysis by
[7 words unchanged]
out on the pseudonymised datasets held in the Bristol Medical School eVM.
First, a missing
Where the University of Bristol identify any
data
analysis
that is surplus to the project purposes, this
will be
carried out to explore the best method to handle missing data in the linked dataset. Second, statistical analyses will be conducted to explore the differences between children in care and the general population group in relation to the research questions. The analyses will then be extended to explore if differences exist between local authorities (LAs). Modelling techniques will be used to establish the risk of referral/re-referral to mental health services for children in care, compared with children in the general population; and to explore whether children's age, such
destroyed
as
being a teenager, has any influence on mental health referrals and outcomes.
soon as possible.
In the first phase of the project, NHS Digital data will not be linked to any other data. In the second phase of the project – to be covered by a revision to this Data Sharing Agreement – it is intended that NHS Digital data will be linked to pseudonymised Department for Education (DfE) data using a common pseudonymised identifier, as described in ‘Objectives for Processing’.
First, a missing data analysis will be carried out to explore the best method to handle missing data in the linked dataset. Second, statistical analyses will be conducted to explore the differences between children in care and the general population group in relation to the research questions. The analyses will then be extended to explore if differences exist between local authorities (LAs). Modelling techniques will be used to establish the risk of referral/re-referral to mental health services for children in care, compared with children in the general population; and to explore whether children's age, such as being a teenager, has any influence on mental health referrals and outcomes.
In the first phase of the project, NHS England data will not be linked to any other data. In the second phase of the project – to be covered by a revision to this Data Sharing Agreement – it is intended that NHS England data will be linked to pseudonymised Department for Education (DfE) data using a common pseudonymised identifier, as described in ‘Objectives for Processing’.
[4 paragraphs unchanged]
Benefits reported
Stated in the previous version and removed here.
Yielded Benefits is not a requirement for new applications.
Unchanged: Expected output, Expected measurable benefits.
Objective for processing
The University of Bristol requires access to NHS England data for the purpose of the following research project: "Using national-level linked administrative data to explore prevalence of mental health concerns and characteristics of mental health services received by children in State care in England before, during and after the COVID-19 pandemic".
Background
Children in State care constitute a vulnerable group of children in society. At any given time in England, there are around 80,000 children being looked after by the State. The majority of these children are taken into State care due to experiences of severe maltreatment such as abuse or neglect. Research studies indicate that mental health concerns in this vulnerable child population are high with 50% of children in State care having a diagnosable mental health concern, when compared to 12% of children in the general population. Despite this high prevalence of mental health concerns, there is no established evidence base on the characteristics and vulnerabilities of children in care who are referred to mental health services (MHS) and their prognosis and pathways through the MHS system in England, including the impact of the COVID-19 pandemic. This has been flagged by the Children’s commissioner of England and the Education Committee as a serious concern that needs to be addressed.
Objectives
The primary objective of this project is to fill this gap in knowledge and to establish new and timely information on the prevalence of mental health concerns in the population of children in care; provision of MHS; and children’s prognosis and pathways through the MHS compared with children in the general population before, during and after the COVID-19 pandemic. A secondary objective of this project, to be pursued at such time as the required data from the Department for Education (DfE) becomes available, is to deliver a novel linkage which will demonstrate potential for combining NHS health records with routine social care records. Although children in care who have referrals to MHS and who are in receipt of MHS are recorded by the NHS, this data is not routinely linked back to their care or education records.
The project aims to answer these research questions, with an emphasis on exploring any change before/during/after the Covid-19 pandemic:
1. What are the pathways to mental health referral, treatment, discharge and re-referral for children in care compared with the children and young people in the general population?
2. What is the prevalence of the different mental health conditions of children in care referred to MHS and how does this compare with the children and young people in the general population?
3. Is there a difference in the MHS provision and outcomes for children in care when compared with children in the general population?
4. Do the referrals and MHS provision differ for specific groups of children in care? (e.g. by ethnicity/ age/ gender/ disability/ type of placement/ legal status/ previous experience of maltreatment/ number of placements in care)
5. What are the characteristics of children in care in England who are in receipt of MHS and are they different to children in care who are not in receipt of MHS?
6. Is there any variation between local authorities on the mental health service referrals and outcomes for children in care?
7. Controlling for other factors, what is the association between children’s yearly collected scores on the Strengths and Difficulties Questionnaire (SDQ) collected by the DfE and their referrals to MHS?
8. What are the characteristics and preceding care experiences of children in care who are admitted to hospitals for mental health related concerns and children in care who are referred to mental health services?
9. How useful is the newly linked social care-education-mental health data in exploring the mental health service provision, prognosis and pathways of children in care through the MHS provision in England?
The project is planned to be carried out in two phases. This data sharing agreement covers the first phase, wherein mental health episodes of school-aged children will be identified from (unlinked) NHS England data. It is intended that a subsequent amendment to this agreement will be made to cover the second phase, wherein NHS England data will be linked with data from the DfE.
Data Requirements
The study design is an analysis of pseudonymised, individual-level data from national, population-level data sources. Individual-level data is required to track individual trajectories over time/ across datasets. It is important not to narrow the sampling frame geographically in order to capture a sufficient number of children in care to provide enough statistical power for analyses and to obtain a detailed picture of their mental health prognoses and service provisions. National data is also requested to enable analyses of local authority level variation. There are no alternative, less intrusive ways of achieving the purpose.
Sample
The data subjects for this project will be any children or young people who could have been a pupil in England; in key stage 1-5 education; at any time since 1st April 2015; and have had a mental health episode recorded during their childhood (up to the age of 18). Baseline data for the analyses will be calculated with data on all children, who were not in care; and who could have been a pupil in England; in key stage 1-5 education; at any time since 1st April 2015; and have had a mental health episode recorded during their childhood (up to the age of 18).
Datasets
In Phase 1, the research team request access to all available current and historical hospital and mental health episodes, up to the age of 18 (where possible to define this within the constraints of the applicable datasets and not excessively burdensome), for all children and young people who had been a pupil in England since 1st April 2015 from the following NHS England datasets:
• Mental Health Services Dataset (MHSDS): This national dataset, centrally collated and held by NHS England, includes person-based information on all individuals in England who are in contact with the Mental Health Services. Data on children and young people have been available in the MHSDS since 1st April 2016. The information contained in this dataset includes, for example, reason for referral, mental health legal status, assessment outcomes, disability, primary/secondary diagnoses, type of treatment/therapy programme and waiting times. It also identifies children and young people looked after by the State. Children and Young People’s Improving Access to Psychological Therapies (CYP IAPT) data form part of the MHSDS. This is a programme of evidenced-based psychological therapies to provide emotional and wellbeing support to children and young people in England through outpatient clinics in the community. IAPT services are characterized by routine outcome monitoring, which will be used for analyses in this research.
• Hospital Episode Statistics (HES): HES is a database containing details of all admissions, A&E attendances, and outpatient appointments at NHS hospitals in England. Important mental health information can be found within the HES centralised secondary care records. The University of Bristol request data from Admitted Patient Care (APC) (e.g., recording admissions into psychiatric care); Accident & Emergency (A&E)/ the Emergency Care Data Set (ECDS) (e.g. presenting for care following self-harming or overdose); and Outpatients (e.g. follow-up outpatient treatments for mental health). HES APC and HES OP data are being requested from 2003/04 to enable capture of historical mental health linked episodes of care linked to children and young people who have been pupils in England since 1st April 2015. With the same justification, HES A&E data are being requested from 2007/08 as the earliest available data from this domain, to enable the same type of longitudinal analyses as for the HES APC and HES OP data.
The MHSDS includes a variable which flags ‘children looked after by the State’ and HES includes a ‘discharge destination’ field, which flag children going back into placements in State care. Therefore, the unlinked and pseudonymised record level data from MHSDS and HES (including ECDS) data being requested from NHS England in this initial Data Sharing Agreement will enable the University of Bristol to answer research questions 1, 2, 3, 9 and to partially answer research question 4.
For the intended phase 2, the University of Bristol proposes to link the NHS’s national dataset on mental health services (MHSDS) and hospital episode statistics (HES) data with administrative datasets held by the Department for Education (DfE) on all pupils (NPD data) and children in State care (SSDA903 data). This is planned to enable answering of research questions 4, 5,7, 8 and 9.
Data linkage and access
Phase 1 of the research involves linkage between NHS’ MHSDS and HES datasets. No external data will be linked in this phase.
Data minimisation
The research team’s approach to minimisation is based on two key approaches: 1) that only variables necessary for the investigation are being requested; and 2) only the records of relevant health events are being requested where possible and not excessively burdensome. The researchers believe there is no less intrusive manner to achieve the research than the use of pre-existing administrative data.
In phase 1, HES APC data is being filtered by diagnosis code, and HES OP is being filtered by treatment function code in order to retrieve records related to mental health admissions. As HES OP only has diagnosis codes populated for ~5% of records, this would be an inappropriate method by which to filter the data. MHSDS will only cover mental health-related episodes, and therefore does not require further filtering by diagnosis. All HES A&E and ECDS episodes are required, as the research is examining the number of emergency admission episodes which may represent an opportunity for a mental health referral. Vulnerable children tend to use A&E services in the first instance rather than their GP. Where vulnerable children relocate between carers, there is value in reviewing their behaviour in regard to accessing health care and mental health care during periods when in care and periods when they are not. In addition, HES A&E does not contain any single variable which can be filtered on to classify an episode as pertaining to mental health. A combination of variables must be used to make this inference.
The University of Bristol's request is minimised to include only children and young people who have had a mental health episode during their childhood (where possible to define this within the constraints of the applicable datasets). The request cannot be minimised further due to statistical power and sample diversity issues. The research aims to compare the mental health burden in children looked after by the State versus the wider population. It will investigate explanatory factors behind differences and whether they differ for subgroups of children (for e.g., by gender, ethnicity, mental illness, local authority). To draw sufficiently heterogeneous controls (when selected at random) is unlikely unless using a large ratio of children and young people in State care to those in the general population. To use a smaller control population would add considerable complexity, potential for bias, and resource implications for limited minimisation benefits. Given the very low prevalence of some mental illnesses (for example, the prevalence of panic disorder in the population is 0.6%), data on all children and young people referred to mental health services is required to enable enough power for analyses of these sub-groups. Access to data on all children and young people referred to mental health services is therefore believed to be proportionate to the aims of this project.
Data needs to be retained for all children and young people referred in order to track re-referrals of those who were not diagnosed/ put on treatment pathways before (indicating a potentially high risk group, with a requirement for earlier intervention). The University of Bristol will perform any final filtering of the NHS England datasets to ensure that no relevant episodes for the analysis are lost needlessly. Any data surplus to study requirements will be destroyed.
Legal Bases
The University of Bristol’s legal basis to process this data is under Article 6(1)(e) of the GDPR because the processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller. The research is in the public interest as it will provide a new evidence base on the mental health of a most vulnerable group of children in the population to enable better service provision and patient care. The University of Bristol’s legal basis for processing special categories of data is Article 9(2)(j) – scientific, historical research purposes or statistical purposes. The processing is carried out in accordance with Article 89(1) of the UK GDPR and is in the public interest.
Organisations
The University of Bristol is the sole data controller for this project, who also process the data.
This research project has a study advisory group who help to interpret the small numbers suppressed results from the analyses, review reports and provide advice on how the results can feed back into policy and practice. The advisory group contains members from the NHS (a designated nurse for looked after children), DfE, charities and academic institutions.
NHS England will provide pseudonymised health data directly to the Bristol Medical School eVM (encapsulated virtual machine) in phase 1. The eVM is a secure research environment. All statistical output created will also be checked by the eVM team (the eVM team are all substantive employees of the University of Bristol and are accredited to Office for National Statistics (ONS) standards to check data releases) for disclosure before being released to the research team. There will be no attempt made to re-identify individuals within the dataset.
The project is funded by the Nuffield Foundation.
None of the above organisations are involved in determining the purpose or the means of the data processing and are not considered joint data controllers. Only the University of Bristol will process NHS England data under this Agreement.
Expected output
To enable the conversion of the results into practicable actions, the results of the study will be communicated to a number of stakeholders including; (1) Policy makers; (2) Practitioners and service providers and; (3) Third sector organisations such as charities and organisations campaigning for children’s rights and better service provision for children in care.
The research already benefits from an advisory group with representation from all of these sectors. The advisory group comprises the following organisations:
Care Leaver's Association, NHS, CoramBAAF, Anna Freud Centre (children’s mental health charity), Children’s Rights Advocacy Service, Thinking Allowed (children and adolescent mental health service for children looked after or adopted), BECOME (the leading national charity for children and young people in care and young care leavers), Department for Education, University of York, University College London and the University of Oxford.
Planned outputs:
• Three interim reports, final report and another two separate briefing papers, addressing the main research questions.
• The project website will provide information on the study, research outputs and links to stakeholders. The project webpage hosted by the Nuffield Foundation (https://www.nuffieldfoundation.org/project/mental-health-service-provision-children-in-state-care-england) will provide information on the study and publish all project reports when they become available.
• At least three academic papers addressing the research questions intend to be submitted to leading journals (such as Child Development, the British Medical Journal, Journal of Child Psychology and Psychiatry, Child Abuse and Neglect, European Journal of Child & Adolescent Psychiatry, and Developmental Psychopathology).
• Syntax/code will be deposited at the UK Data Service, to enable future use by other researchers.
• Mental health of children and the impact of COVID-19 is a topical issue. The study is expected to be publicised through press releases, policy blogs and briefing papers in collaboration with the University of Bristol press office, Nuffield Foundation press office and Policy Bristol. The results of the recently concluded Economic and Social Research Council funded study led by the principal investigator (PI) were covered by numerous national media outlets (e.g. The Independent, The Guardian, Community Care, Children and Young People Now, The Conversation, LBC Radio).
• The study output will also be shared with social workers and other practitioners via the British Association for Adoption and Fostering (the PI sits on the research advisory group of CoramBAAF - an independent membership organisation for professionals, foster carers and adopters, and anyone else working with or looking after children in or from care, or adults who have been affected by adoption), through the ‘Research in Practice’ network, and via other publications targeted at practitioners, such as ‘Community Care’ and ‘Children and Young People Now’.
• Register the study at the Parliamentary Office of Science and Technology (https://post.parliament.uk/contributing-to-a-postnote-as-an-expert/), which creates briefing notes for parliamentarians on key subject areas. Academics and subject experts are able to suggest policy relevant topic areas to the Parliamentary Office of Science and Technology team.
• Lobby parliamentarians for policy changes through stakeholders and involvement in All Party Parliamentary Groups (APPGs) on abused and neglected children; looked after children and care leavers.
• Joint conference with stakeholders.
• The Children’s Commissioner will be provided a copy of the study outputs.
Access to the data is strictly controlled by cyber and physical security by the UoB IT department. All statistical outputs will be checked by the UoB team for disclosure. All results will be presented as aggregated data with small number counts suppressed in line with the HES Analysis guide.
Funding is in place for this project until December 2023 by when the results and papers are expected to be completed and available for public dissemination.
DARS-NIC-382333-M5J9W-v0.7 27 October 2022 to 26 October 2024
- Title
- Using national-level linked administrative data to explore prevalence of mental health concerns and characteristics of mental health services received by children in State care in England before, during and after the COVID-19 pandemic.
- Commercial
- No
- Sublicensing
- No
- Datasets
- 5
- Files released
- 51
Datasets: Emergency Care Data Set (ECDS); Hospital Episode Statistics Accident and Emergency (HES A and E); Hospital Episode Statistics Admitted Patient Care (HES APC); Hospital Episode Statistics Outpatients (HES OP); Mental Health Services Data Set (MHSDS)
Objective for processing
The University of Bristol requires access to NHS Digital data for the purpose of the following research project: "Using national-level linked administrative data to explore prevalence of mental health concerns and characteristics of mental health services received by children in State care in England before, during and after the COVID-19 pandemic".
Background
Children in State care constitute a vulnerable group of children in society. At any given time in England, there are around 80,000 children being looked after by the State. The majority of these children are taken into State care due to experiences of severe maltreatment such as abuse or neglect. Research studies indicate that mental health concerns in this vulnerable child population are high with 50% of children in State care having a diagnosable mental health concern, when compared to 12% of children in the general population. Despite this high prevalence of mental health concerns, there is no established evidence base on the characteristics and vulnerabilities of children in care who are referred to mental health services (MHS) and their prognosis and pathways through the MHS system in England, including the impact of the COVID-19 pandemic. This has been flagged by the Children’s commissioner of England and the Education Committee as a serious concern that needs to be addressed.
Objectives
The primary objective of this project is to fill this gap in knowledge and to establish new and timely information on the prevalence of mental health concerns in the population of children in care; provision of MHS; and children’s prognosis and pathways through the MHS compared with children in the general population before, during and after the COVID-19 pandemic. A secondary objective of this project, to be pursued at such time as the required data from the Department for Education (DfE) becomes available, is to deliver a novel linkage which will demonstrate potential for combining NHS health records with routine social care records. Although children in care who have referrals to MHS and who are in receipt of MHS are recorded by the NHS, this data is not routinely linked back to their care or education records.
The project aims to answer these research questions, with an emphasis on exploring any change before/during/after the Covid-19 pandemic:
1. What are the pathways to mental health referral, treatment, discharge and re-referral for children in care compared with the children and young people in the general population?
2. What is the prevalence of the different mental health conditions of children in care referred to MHS and how does this compare with the children and young people in the general population?
3. Is there a difference in the MHS provision and outcomes for children in care when compared with children in the general population?
4. Do the referrals and MHS provision differ for specific groups of children in care? (e.g. by ethnicity/ age/ gender/ disability/ type of placement/ legal status/ previous experience of maltreatment/ number of placements in care)
5. What are the characteristics of children in care in England who are in receipt of MHS and are they different to children in care who are not in receipt of MHS?
6. Is there any variation between local authorities on the mental health service referrals and outcomes for children in care?
7. Controlling for other factors, what is the association between children’s yearly collected scores on the Strengths and Difficulties Questionnaire (SDQ) collected by the DfE and their referrals to MHS?
8. What are the characteristics and preceding care experiences of children in care who are admitted to hospitals for mental health related concerns and children in care who are referred to mental health services?
9. How useful is the newly linked social care-education-mental health data in exploring the mental health service provision, prognosis and pathways of children in care through the MHS provision in England?
The project is planned to be carried out in two phases. This data sharing agreement covers the first phase, wherein mental health episodes of school-aged children will be identified from (unlinked) NHS Digital data. It is intended that a subsequent amendment to this agreement will be made to cover the second phase, wherein NHS Digital data will be linked with data from the DfE.
Data Requirements
The study design is an analysis of pseudonymised, individual-level data from national, population-level data sources. Individual-level data is required to track individual trajectories over time/ across datasets. It is important not to narrow the sampling frame geographically in order to capture a sufficient number of children in care to provide enough statistical power for analyses and to obtain a detailed picture of their mental health prognoses and service provisions. National data is also requested to enable analyses of local authority level variation. There are no alternative, less intrusive ways of achieving the purpose.
Sample
The data subjects for this project will be any children or young people who could have been a pupil in England; in key stage 1-5 education; at any time since 1st April 2015; and have had a mental health episode recorded during their childhood (up to the age of 18). Baseline data for the analyses will be calculated with data on all children, who were not in care; and who could have been a pupil in England; in key stage 1-5 education; at any time since 1st April 2015; and have had a mental health episode recorded during their childhood (up to the age of 18). This covers children born between 1997 and 2017.
Datasets
In Phase 1, the research team request access to all available current and historical hospital and mental health episodes, up to the age of 18, for all children and young people who had been a pupil in England since 1st April 2015 from the following NHS Digital datasets:
• Mental Health Services Dataset (MHSDS): This national dataset, centrally collated and held by NHS Digital, includes person-based information on all individuals in England who are in contact with the Mental Health Services. Data on children and young people have been available in the MHSDS since 1st April 2016. The information contained in this dataset includes, for example, reason for referral, mental health legal status, assessment outcomes, disability, primary/secondary diagnoses, type of treatment/therapy programme and waiting times. It also identifies children and young people looked after by the State. Children and Young People’s Improving Access to Psychological Therapies (CYP IAPT) data form part of the MHSDS. This is a programme of evidenced-based psychological therapies to provide emotional and wellbeing support to children and young people in England through outpatient clinics in the community. IAPT services are characterized by routine outcome monitoring, which will be used for analyses in this research.
• Hospital Episode Statistics (HES): HES is a database containing details of all admissions, A&E attendances, and outpatient appointments at NHS hospitals in England. Important mental health information can be found within the HES centralised secondary care records. The University of Bristol request data from Admitted Patient Care (APC) (e.g., recording admissions into psychiatric care); Accident & Emergency (A&E)/ the Emergency Care Data Set (ECDS) (e.g. presenting for care following self-harming or overdose); and Outpatients (e.g. follow-up outpatient treatments for mental health). HES APC and HES OP data are being requested from 2003/04 to enable capture of historical mental health linked episodes of care linked to children and young people who have been pupils in England since 1st April 2015. With the same justification, HES A&E data are being requested from 2007/08 as the earliest available data from this domain, to enable the same type of longitudinal analyses as for the HES APC and HES OP data.
The MHSDS includes a variable which flags ‘children looked after by the State’ and HES includes a ‘discharge destination’ field, which flag children going back into placements in State care. Therefore, the unlinked and pseudonymised record level data from MHSDS and HES (including ECDS) data being requested from NHS Digital in this initial Data Sharing Agreement will enable the University of Bristol to answer research questions 1, 2, 3, 9 and to partially answer research question 4.
For the intended phase 2, the University of Bristol proposes to link the NHS’s national dataset on mental health services (MHSDS) and hospital episode statistics (HES) data with administrative datasets held by the Department for Education (DfE) on all pupils (NPD data) and children in State care (SSDA903 data). This is planned to enable answering of research questions 4, 5,7, 8 and 9.
Data linkage and access
Phase 1 of the research involves linkage between NHS’ MHSDS and HES datasets. No external data will be linked in this phase.
Data minimisation
The research team’s approach to minimisation is based on two key approaches: 1) that only variables necessary for the investigation are being requested; and 2) only the records of relevant health events are being requested where possible. The researchers believe there is no less intrusive manner to achieve the research than the use of pre-existing administrative data.
In phase 1, HES APC data is being filtered by diagnosis code, and HES OP is being filtered by treatment function code in order to retrieve records related to mental health admissions. As HES OP only has diagnosis codes populated for ~5% of records, this would be an inappropriate method by which to filter the data. MHSDS will only cover mental health-related episodes, and therefore does not require further filtering by diagnosis. All HES A&E and ECDS episodes are required, as the research is examining the number of emergency admission episodes which may represent an opportunity for a mental health referral. Vulnerable children tend to use A&E services in the first instance rather than their GP. Where vulnerable children relocate between carers, there is value in reviewing their behaviour in regard to accessing health care and mental health care during periods when in care and periods when they are not. In addition, HES A&E does not contain any single variable which can be filtered on to classify an episode as pertaining to mental health. A combination of variables must be used to make this inference.
The University of Bristol's request is minimised to include only children and young people who have had a mental health episode during their childhood. The request cannot be minimised further due to statistical power and sample diversity issues. The research aims to compare the mental health burden in children looked after by the State versus the wider population. It will investigate explanatory factors behind differences and whether they differ for subgroups of children (for e.g., by gender, ethnicity, mental illness, local authority). To draw sufficiently heterogeneous controls (when selected at random) is unlikely unless using a large ratio of children and young people in State care to those in the general population. To use a smaller control population would add considerable complexity, potential for bias, and resource implications for limited minimisation benefits. Given the very low prevalence of some mental illnesses (for example, the prevalence of panic disorder in the population is 0.6%), data on all children and young people referred to mental health services is required to enable enough power for analyses of these sub-groups. Access to data on all children and young people referred to mental health services is therefore believed to be proportionate to the aims of this project.
Data needs to be retained for all children and young people referred in order to track re-referrals of those who were not diagnosed/ put on treatment pathways before (indicating a potentially high risk group, with a requirement for earlier intervention). The University of Bristol will perform any final filtering of the NHS Digital datasets to ensure that no relevant episodes for the analysis are lost needlessly. Any data surplus to study requirements will be destroyed.
Legal Bases
The University of Bristol’s legal basis to process this data is under Article 6(1)(e) of the GDPR because the processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller. The research is in the public interest as it will provide a new evidence base on the mental health of a most vulnerable group of children in the population to enable better service provision and patient care. The University of Bristol’s legal basis for processing special categories of data is Article 9(2)(j) – scientific, historical research purposes or statistical purposes. The processing is carried out in accordance with Article 89(1) of the UK GDPR and is in the public interest.
Organisations
The University of Bristol is the sole data controller for this project, who also process the data.
This research project has a study advisory group who help to interpret the small numbers suppressed results from the analyses, review reports and provide advice on how the results can feed back into policy and practice. The advisory group contains members from the NHS (a designated nurse for looked after children), DfE, charities and academic institutions.
NHS Digital will provide pseudonymised health data directly to the Bristol Medical School eVM (encapsulated virtual machine) in phase 1. The eVM is a secure research environment. All statistical output created will also be checked by the eVM team (the eVM team are all substantive employees of the University of Bristol and are accredited to Office for National Statistics (ONS) standards to check data releases) for disclosure before being released to the research team. There will be no attempt made to re-identify individuals within the dataset.
The project is funded by the Nuffield Foundation.
None of the above organisations are involved in determining the purpose or the means of the data processing and are not considered joint data controllers. Only the University of Bristol will process NHS Digital data under this Agreement.
Expected output
To enable the conversion of the results into practicable actions, the results of the study will be communicated to a number of stakeholders including; (1) Policy makers; (2) Practitioners and service providers and; (3) Third sector organisations such as charities and organisations campaigning for children’s rights and better service provision for children in care.
The research already benefits from an advisory group with representation from all of these sectors. The advisory group comprises the following organisations:
Care Leaver's Association, NHS, CoramBAAF, Anna Freud Centre (children’s mental health charity), Children’s Rights Advocacy Service, Thinking Allowed (children and adolescent mental health service for children looked after or adopted), BECOME (the leading national charity for children and young people in care and young care leavers), Department for Education, University of York, University College London and the University of Oxford.
Planned outputs:
• Three interim reports, final report and another two separate briefing papers, addressing the main research questions.
• The project website will provide information on the study, research outputs and links to stakeholders. The project webpage hosted by the Nuffield Foundation (https://www.nuffieldfoundation.org/project/mental-health-service-provision-children-in-state-care-england) will provide information on the study and publish all project reports when they become available.
• At least three academic papers addressing the research questions intend to be submitted to leading journals (such as Child Development, the British Medical Journal, Journal of Child Psychology and Psychiatry, Child Abuse and Neglect, European Journal of Child & Adolescent Psychiatry, and Developmental Psychopathology).
• Syntax/code will be deposited at the UK Data Service, to enable future use by other researchers.
• Mental health of children and the impact of COVID-19 is a topical issue. The study is expected to be publicised through press releases, policy blogs and briefing papers in collaboration with the University of Bristol press office, Nuffield Foundation press office and Policy Bristol. The results of the recently concluded Economic and Social Research Council funded study led by the principal investigator (PI) were covered by numerous national media outlets (e.g. The Independent, The Guardian, Community Care, Children and Young People Now, The Conversation, LBC Radio).
• The study output will also be shared with social workers and other practitioners via the British Association for Adoption and Fostering (the PI sits on the research advisory group of CoramBAAF - an independent membership organisation for professionals, foster carers and adopters, and anyone else working with or looking after children in or from care, or adults who have been affected by adoption), through the ‘Research in Practice’ network, and via other publications targeted at practitioners, such as ‘Community Care’ and ‘Children and Young People Now’.
• Register the study at the Parliamentary Office of Science and Technology (https://post.parliament.uk/contributing-to-a-postnote-as-an-expert/), which creates briefing notes for parliamentarians on key subject areas. Academics and subject experts are able to suggest policy relevant topic areas to the Parliamentary Office of Science and Technology team.
• Lobby parliamentarians for policy changes through stakeholders and involvement in All Party Parliamentary Groups (APPGs) on abused and neglected children; looked after children and care leavers.
• Joint conference with stakeholders.
• The Children’s Commissioner will be provided a copy of the study outputs.
Access to the data is strictly controlled by cyber and physical security by the UoB IT department. All statistical outputs will be checked by the UoB team for disclosure. All results will be presented as aggregated data with small number counts suppressed in line with the HES Analysis guide.
Funding is in place for this project until December 2023 by when the results and papers are expected to be completed and available for public dissemination.
Benefits reported
Yielded Benefits is not a requirement for new applications.
Register history
When this agreement appeared in, or was edited in, each monthly edition of the register. Built by comparing every edition this site holds.
-
December 2022 —
first listed. 1 version: DARS-NIC-382333-M5J9W-v0.7
-
July 2023
1 version added: DARS-NIC-382333-M5J9W-v1.3
-
July 2024
1 version added: DARS-NIC-382333-M5J9W-v2.3
Cite this page
NHS England (2026) Data Uses Register, September 2026 edition, agreement DARS-NIC-382333-M5J9W, “Using national-level linked administrative data to explore prevalence of mental health concerns and characteristics of mental health services received by children in State care in England before, during and after the COVID-19 pandemic.”. Read via NHS Data Access Explorer (unofficial), https://healthdatauses.uk/agreements/dars-nic-382333-m5j9w/ (accessed [date]).
This address stays the same, but the page is rebuilt with each monthly edition, so the citation names the edition it shows. Every edition's data is kept in the facts store.
Source: datausesregister_september2026.xlsx, September 2026 edition of the NHS England Data Uses Register. Search that workbook for DARS-NIC-382333-M5J9W to see the original rows.