MAPS: Mental Health Admissions to Paediatric Wards Study

University College London (UCL requires access to NHS England data for the purpose of the following research project: MAPS: Mental Health Admissions to Paediatric Wards Study.

The following is a summary of the aims of the research project provided on behalf of UCL:

The Mental Health Admissions to Paediatric Wards (MAPS) project seeks to understand and improve the quality of care for children and young people (CYP) presenting with mental health (MH) crises and who are admitted to acute inpatient services.

CYP presenting with a MH crisis are frequently admitted to general acute inpatient wards as a place of safety. Previous work has demonstrated that up to 6% of general paediatric inpatient beds were occupied by CYP due to MH crisis, and during the pandemic, there is evidence that both numbers of mental health paediatric admissions have increased and that paediatric teams are experiencing challenges delivering safe care. There have been longstanding concerns about the quality of care to support these patients in this setting, as well as significant cost implications for these admissions. There is limited published data on CYP with MH crisis admissions to general paediatric wards, including total numbers, factors associated with admissions such as availability and quality of community mental health provision, outcomes for CYP admitted, and the impact of admissions on CYP, parents and professionals caring for them.

The MAPS project will use mixed methods across 4 work packages (WP) to investigate these trends and generate a Theory of Change (ToC) model to positively impact the quality of care for CYP presenting in mental health crises.

1) Describe the current burden and recent trends in mental healthcare activity in England (WP1).

2) Investigate factors influencing decisions to admit CYP to paediatric wards for primary MH problems (WP2).

3) Explore views and experiences of CYP, families and health professionals during admissions to paediatric wards (WP3).

4) Synthesise data with a stakeholder group to create a ToC model for agreed impacts to inform service provision (WP4)

This Data Sharing Agreement relates only to WP1 of this project, (hereafter “this project”) which will be limited to secondary analyses of hospital administrative and population-level data.

WP1 Objectives

1) Describe trends in mental health admissions to acute inpatient services, attendances to accident & emergency (A&E), and outpatient appointments related to mental health within England 2015- 2022 in children and young people aged 5-18

2) Understand the financial burden of mental health admissions to acute paediatric wards among CYP aged 5-18 in England

3) Examine the role of primary and community health care services both before and after admission of children and young people with mental health conditions to and from paediatric wards.

The following NHS England Data will be accessed:

• HES Admitted Patient Care (APC) - required to describe the number and characteristics of CYP admitted to hospital with any cause, and those admitted due to mental health concerns over the study period.

• HES Outpatient Care (OPC) - required to describe CYP who have required outpatient care for medical or mental health problems during the study period.

• HES Accident and Emergency (A&E) - required to describe CYP who have required attended accident and emergency for medical or mental health problems during the study period.

• HES Emergency Care Dataset (ECDS) - required to describe CYP who have required attended accident and emergency for medical or mental health problems during the study period.

• Mental Health Services Dataset (MHSDS) - required to describe CYP who have been seen or referred to community mental health services during the study period.

• Civil Death Registration - required to describe mortality within CYP who have attended accident and emergency, outpatient care, been admitted to hospital, or have been known to community mental health services during the study period .

The above datasets are required to allow the WP1 objectives to be achieved.

Objective 1- The above datasets are necessary to describe trends over time by age group, sex, markers of deprivation, prior MH healthcare activity and comorbid physical health problems, and analyse geographic variation in MH healthcare activity within England.

Objective 2- To achieve objective 2, it is necessary first to identify and group all hospitalisations in England in CYP due to MH concerns in acute inpatient services (objective 1). Then, data within the National Cost Collection for NHS will be used to estimate the financial burden associated with admitting CYP to an acute hospital inpatient unit for all causes and those related to mental health admissions. This cost will then be extrapolated to a national estimate and describe changes in the financial burden of MH admissions due to acute inpatient paediatric services over time and how this varies by different parts of England.

Objective 3- To achieve this objective, the quality of primary and community care will be used as a predictor for outcomes, including the number and length of stay of CYP admitted to acute inpatient units related to mental health crises and other outcomes, including mortality. HES data will be linked to MHSDS to assess the effect of access to community provision of mental health services on admission to paediatric wards in hospitals due to mental health problems.

The level of the Data will be pseudonymised individual-level data across all datasets.

The Data will be minimised as follows:

For MHSDS, the data will be minimised to children and young people within the MHSDS dataset who began a MHSDS episode between 2017/18 to 2023/24 whilst between the age of 5 to 18 years at the start of that episode.

HES OP, HES A&E, ECDS, HES APC will not undergo this same minimisation, but instead will be limited to children and young people within these datasets between 2017/18 to 2023/24 whilst between the age of 5 to 18 years at the start of the activity.

For Civil Registrations the data will be minimised to children and young people who are present in the MHSDS, HES OP, HES A&E, ECDS, HES APC data extracts described above.

The data requested is limited to CYP aged 5-18, as MH presentations in CYP under 5 years of age are rare. The years of data requested have also been limited, including only 5 years of data as a minimum to understand trends before the pandemic, during the pandemic, and healthcare activity as the impact of the pandemic has eased.

UCL is the controller and the organisation responsible for ensuring that the Data will only be processed for the purpose described above.

Other organisations involved include-

Queen Mary, University of London

Imperial College London

Great Ormond Street Hospital NHS Trust

University of Surrey

University Hospitals of Leicester NHS Trust

NHS England

These organisations have no access to the Data, nor will they hold any influence over how the data is processed under this Data Sharing Agreement. These organisations are collaborators over all work packages (including WP1) and will be supporting write-up/dissemination.

VIRTUS Data Centre (Backup for UCL)

Amazon Web Services

The VIRTUS data centre only provides physical data storage, and all data processing is carried out exclusively by UCL. Similarly, the Amazon Web Services (AWS) data centre is solely responsible for the cloud storage of data, and data processing is performed only by individuals substantively employed by UCL.

The lawful basis for processing personal data under the UK GDPR is:

Article 6(1)(e) - 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 lawful basis for processing special category data under the UK GDPR is:

Article 9(2)(j) - processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.

This processing is in the public interest because there is a clear public interest in investigating national trends and characteristics of mental health care activity amongst CYP in England, to inform improvements to service provision in this field.

The funding is provided by National Institute for Health and Care Research Award (NIHR135036). The funding is specifically for the study described. Funding is in place until November 2024.

Data will be accessed by:

- substantive employees of UCL

• Individuals holding an honorary contract under the supervision of a substantive employee of UCL for the purposes described in this DSA only. UCL must maintain records in a single location that cover the following details of each individual given access under an honorary contract:

o Their substantive employer;

o Their role in respect of the purpose for the processing specified in the DSA;

o The start date and end date of the duration in which the Data will be accessed by the individual under an honorary contract;

o The necessity for the Data to be accessed by the person(s) holding an honorary contract, instead of a substantive employee of an organisation named as controller or a processor in this DSA;

o Confirmation that an appropriate contract is in place which follows the relevant guidance and is countersigned by the substantive employer of the honorary contract holder.

The research proposal and dissemination plan were presented to members of the Think4Brum (T4B), which is the youth advisory group for Forward Thinking Birmingham (FTB), and the GOSH Young Persons’ Advisory Group for research (YPAG) in October and November 2022, respectively, as part of a Patient and Public Involvement and Engagement initiative. The T4B and GOSH-YPAG are a diverse group of CYP recruited from across the country who have received training in research methods and policy. Focus groups of 40 young people (32 from GOSH and 8 from T4B) aged <18 (and parents) was held to discuss the acceptability of the research methods (including the use of data without consent).

The groups were overwhelmingly supportive of the importance of this research and the necessity of analysing data without consent. The young people raised the issue of data usage and security, but the explanations for how UCL will use and store the data were acceptable to those who attended. For one of the young people’s groups:, "we did have some concern about usage of data but that was allayed when we feedback input from our session.”

UCL will seek to discuss possible dissemination activities with these groups as the project progresses.

As part of the NIHR process (mandatory), there is a study advisory/oversight group made up of senior academics and patient groups who UCL meet and report to. None of this group have access to data.

No data will flow to NHS England for the purposes of this Data Sharing Agreement (DSA).

The NHS England data will be transferred to and only analysed within the UCL Data Safe Haven (DSH).

The Data will not be transferred to any other location.

The data will be stored and analysed entirely within the UCL DSH.

Back-up is part of UCL’s secure process, with involvement as described above.

The Data will be accessed by authorised personnel via remote access.

The Controller(s) must confirm and provide evidence upon audit by NHS England that access via any remote device complies with the data security obligations within this DSA and the Data Sharing Framework Contract.

For remote access:

- Remote access will only be from secure locations situated within the territory of use (as further restricted elsewhere within the DSA if so done) stated within this DSA;

- Access controls granting users the minimum level of access required are in place;

- Remote access is only via secure connections (e.g., VPNs or secure protocols) to protect data;

- Multifactor authentication (MFA) is required for re

- Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls are utilised for the remote access;

- All remote access is undertaken within the scope of the organisation’s DSPT (or other security arrangements as per this DSA) and complies with the organisation’s remote access policy.

The above applies in addition to any condition set out elsewhere within the DSA (e.g. who may carry out processing, and for what purpose).

The Data will not leave England at any time.

Data will only be accessed by individuals within UCL who have authorisation to access the data for the purpose described. Information compliance training for information security, freedom of information, and data protection will be completed by all staff who have access to the data.

There will be no requirement and no attempt to reidentify individuals when using the Data.

The Data will not be linked with any record level data and will not be made available to any third parties other than those specified except in the form of aggregated outputs with small numbers suppressed in line with the HES Analysis Guide.

Primary outputs:

1) Analysis of trends and characteristics of CYP admitted to acute inpatient services due to mental health problems, attendances to accident & emergency (A&E), and outpatient appointments related to mental health within England 2017- 2024 in children and young people aged 5-18

2) Analysis of the financial burden related to mental health admissions to acute paediatric wards among CYP aged 5-18 in England

3) Analysis of the association between community mental health provision and admission to acute inpatient units due to mental health problems amongst CYP.

Secondary outputs:

In addition to the specific outputs outlined above, this workstream will inform the other 3 workstreams of the MAPS project and contribute to an overall report which will describe a summary of findings for each WP. This will outline the Theory of Change model, which will include contributions from collaborators of the RCPCH, RCPysch, NHSE and others. It is envisaged this will be a set of standards for admissions based on the study findings aimed at policy and practice audiences, but this will also be published in a peer-reviewed journal.

All outputs will contain only data that is aggregated with small numbers suppressed in line with the HES Analysis Guide.

Publication in academic journals:

Each objective within this workstream will form a separate publication. The primary targets for publication will be peer-reviewed journals including the Lancet, British Medical Journal and Archives of Disease in Childhood. The team aim to publish these primary outputs by late 2024.

Other dissemination activities:

Findings will also be presented at national and international conferences such as the Royal College of Paediatrics and Child Health (RCPCH) and associated conferences for adolescent health. Findings will also be disseminated through public and media initiatives organised through UCL and other collaborators on this project, which include Imperial College and NHS England. Other professional bodies such as the Royal College of Nursing (RCN), Royal College of General Practitioners (RCGP), the Royal College of Psychiatry (RCPSYCH) and the Royal College of Emergency Medicine (RCEM) will provide further opportunities for knowledge exchange and communication to a range of interested parties. Charities focusing on CYP will also be potential partners for dissemination. All publications, conference presentations, media engagements and other dissemination activities are promoted on Twitter, via institutional (UCL) accounts and the Principle Investigator’s (>3000 followers), and through professional networks of the collaborators on this project.

The first stage of analysis will be completed within 6 months of gaining access to the data and the aim is to publish preliminary results within 12 months. The final analysis from this work package will be completed within 18 months and the report for the whole MAPS project will aim to be completed within a year after.

This project will increase understanding of the burden of health care related to specific mental health disorders, and the impact this has on inpatient admissions to acute services, directly impacting efforts to improve outcomes, and thus enhance the quality of life, health and well-being of the population.

At the outset of the study, the overall aim is to improve the care of CYP presenting in a MH crisis admitted to acute paediatric settings, with this being the primarily aimed impact of the study. However, by producing a Theory of Change approach as described above, desired impacts will be augmented and developed through the process of combining data with stakeholder views. The collaborator and stakeholder networks also provide immediate routes for impact, given the involvement of the key national commissioners and professional bodies, and UCL have costed for open access in the grant to maximise visibility and reuse. Each of the co-investigators and collaborators have large networks in order to reach a large audience with the data. Influence and outputs are not restricted until the end of the study. As ideas and data emerge (including very early on from the modified Delphi and stakeholder meetings), UCL will use them to inform ongoing projects at senior levels of the NHS.

Specific benefits may include:

1) Influencing professional training and workforce planning. It is expected that specific recommendations about training to feature in the final MAPS report which this workstream will feed into. Improvements achieved as an impact of the study could also improve working conditions and retention for Staff within the NHS (given anecdotal reports of the tole of this work at the outset). The current understanding is that nursing and medical professionals are struggling with the issues of MH admissions. UCL would work with the RCN and colleges to produce guidance on training and in future developments of curricula.

2) Influencing developments of current and new models of care. It is expected that the study will produce important information for example on service user needs, safety/ quality issues and economic implications which will be helpful and persuasive within the NHS and further afield. It has been made aware that at least one London trust which is currently planning the redesign of its mental and physical health care for CYP and through one of the collaborators associated with that trust, this can be directly fed into this from the findings even at an early stage through the stakeholders.

3) Providing data and outputs which will enable advocating for and improving cultural views on CYP with MH crises as part of the acute paediatric system (a problem which as outlined frequently gets little attention).

4) Further research and development questions for future work by UCL and others identified in the study, as well as forging new collaborations via stakeholder groups.

Managing children and young people in general acute wards (paediatric and medical) is well recognised as an area where much quality improvement is required. The NHS’ Health Services Safety Investigations Body has recently released a report saying that such admissions represent significant clinical risk. The overall aim of MAPS is to collect evidence to support improving care and deliver recommendations for minimising risk. For WP1 there is currently no national study/report describing patterns/numbers of admissions this will allow the size of the issue to be described to improve patient care and drive policy change – e.g., funding needed, areas needing additional support for patient care.

It is hoped that through the publication of findings in appropriate media, the findings of this research will add to the body of evidence that is considered by the bodies, organisations and individual care practitioners charged with making policy decisions for or within the NHS or treatment decisions in relation to specific patients.

Healthcare stakeholders will need to take action based on the information provided to them in order to realise the potential improvement opportunities. For example, in calculating budgets for NHS organisations and areas of focus for training around numbers and proportions of types of admissions. Also, by linking data requested, the research team can look at how patients interact with other health services.

UCL have a large stakeholder group which includes patients with lived experience, charities, royal colleges, social services and children’s services, NHS England, who are working with UCL to create a theory of change for recommendations. Every relevant group involved in this area will be working with UCL to socialise the findings nationally and internationally. Stakeholder involvement and finding solutions from the work packages is at the heart of this project.

Not stated in the register.