NHS Digital Data Release Register - reformatted

Natcen Social Research projects

2 data files in total were disseminated unsafely (information about files used safely is missing for TRE/"system access" projects).


Patterning of children and young peoples' mental health before and in the context of Covid-19: findings from the 2017 Mental Health of Children and Young People survey and the 2020 MHCYP Covid-19 follow up survey — DARS-NIC-404798-C1Z9R

Opt outs honoured: Anonymised - ICO Code Compliant (Does not include the flow of confidential data)

Legal basis: Health and Social Care Act 2012 - s261 - 'Other dissemination of information'

Purposes: (Research)

Sensitive: Non-Sensitive

When:DSA runs 2020-12-17 — 2023-12-16

Access method: One-Off

Data-controller type: NATIONAL CENTRE FOR SOCIAL RESEARCH

Sublicensing allowed: No

Datasets:

  1. Mental Health of Children and Young People

Objectives:

This agreement from NatCen is for access to the Mental Health of Children and Young People (MHCYP) survey 2017 and Mental Health of Children and Young People (MHCYP) survey follow up carried out in 2020. This piece of work aims to understand temporal trends and inequalities in mental disorder and service use in children and young people, and the different ways in which symptoms of mental distress and difficulty cluster within a national representative sample of children and young people. This will provide up-to-date evidence using the best sources of data on recent trends in child mental health.

This agreement will use the MHCYP survey 2020 follow up survey of the same children and young people to document the extent to which their mental health has changed during the Covid-19 pandemic. Having an understanding of this distribution pre- and post-pandemic, and how they cluster within sub-groups of the population, can help policymakers and service providers understand the population, deliver support and engagement, and check that they are reaching the relevant groups in the population in the post-Covid context. Moreover, assessing the impact of the Covid-19 pandemic on children and young people's mental health will elucidate causal pathways and highlight pathways amenable to intervention to prevent mental health difficulties persisting into adulthood for this generation affected by these extraordinary social circumstances.

The legal basis under GDPR for processing this data falls under Article 6 (1)(f) giving the lawful basis for processing where: “processing is necessary for the purposes of the legitimate interests pursued by the controller or by a third party except where such interests are overridden by the interests or fundamental rights and freedoms of the data subject which require protection of personal data, in particular where the data subject is a child.”

A full Legitimate Interests Assessment has been carried out and provided to NHS Digital, based on the ICO template.

The ultimate aim is for the research to help deliver improvements to the health and social care system and ultimately to benefit patients. Without rigorous research into this issue to provide a contribution to the debate, policies may be made without a detailed understanding of who needs and uses health services.

The MHCYP data is the most recent and highest quality data available which can determine the prevalence and inequalities in child mental health and treatment and service use in England. While there are an abundance of alternative community-led data collections or data from trials and interventions carried out by government departments (Department for Education/Department of Health and Social Care) or mental health research centres (e.g. Anna Freud), these are not representative of the general population and tend to sample specific at-risk groups receiving targeted services. In line with the legitimate interest assessment completed by NatCen), Processing of the MHCYP data will therefore yield unique insights into the prevalence and characteristics of children and young people

-with different types of disorder which will drive demand for services
-with different combinations of disorders which can shape the provision of cross-cutting service
-experiencing inequalities in rates of disorder which might pinpoint areas amenable to intervention
-unable to access specialist services
-experiencing mental health issues in the context of family members with similar conditions.

Having access to the survey dataset means that NatCen can analyse it. The dataset is unique. It is the first survey of its kind for more than a decade, and so no other recent dataset is available. NatCen does not process any data that is not relevant and would be unable to achieve the aims of the research without these data.

In brief, the purpose of this is to investigate prevalence and inequalities in child mental health and treatment and service use in England. The ultimate aim is for the research to help deliver improvements to the health and social care system and ultimately to benefit patients. Without rigorous research into this issue to provide a contribution to the debate, policies may be made without a detailed understanding of who needs and uses health services. It is necessary to use the MHCYP data as it is the best available information on general population patterning in mental disorder and self-harm behaviours in children and young people in England, to examine prevalence and identify factors associated with mental disorder and treatment and service use in children and young people. There is the necessity to ensure government have an accurate understanding about population trends in need and can prioritise and plan services accordingly. Individual interests are balanced with legitimate interests and individual interests are unlikely to over-ride legitimate interests as all participants were recruited via a random sample of households in England using standard techniques used in high quality survey research. The survey data were collected directly from individuals. The data were collected explicitly and only for research purposes. Survey participants were told that this was a survey and were given an information leaflet about MHCYP. The way that their data are used was explained to respondents when the survey was carried out. An initial report has been published using the data.

This project will ensure that the public have an accurate understanding of child mental health. Understanding patterns of child mental health is key to understanding a) the reach of existing services, b) the demand for additional services, c) factors and context that prevention programmes should target or address. Without such information on resources are allocated, services designed and commissioned, public behaviour and concern will be based on outdated and incorrect information,

This agreement uses pseudonoymised information from respondents to minimise the risks of individuals being identified. Risks are further minimised by the process of statistical disclosure control where potentially disclosive findings are suppressed and not disseminated. The findings will describe the prevalence of poor mental health in children and young people aggregated at population and sub-population levels and pose low level risk of harm to the public.

The MHCYP 2017 and MHCYP 2020 follow up survey are unique. They are the first surveys of its kind for more than a decade, and so no other recent dataset is available. NatCen would be unable to achieve the aims of the research without these data. These data will yield national representative findings of the mental health of children and young people, exploring mental health and the risk factors underpinning it at a granular level exploring a vast range of mental health outcomes and their antecedents which is not available in any other data source. The high-level findings of the MHCYP 2017 were published in 2018.

NatCen has an agreement to access the pre-release version of the MHCYP 2017 survey data for use on unfunded research projects. The data will only be used by NatCen for the purposes of understanding temporal trends and inequalities in mental disorder and service use in children and young people.

This agreement is for a single purpose, to explore temporal trends and inequalities in mental disorder and service use in children and young people in England pre and post Covid pandemic, should access be granted. The data will be used as part of a NatCen-led programme of research into understanding temporal trends and inequalities in mental disorder and service use in children and young people. NatCen will control and process the data at all times. Involvement of other parties will extend to intellectual collaboration and assistance with formulating hypotheses and devising research questions to achieve the as specified aim: understanding temporal trends and inequalities in mental disorder and service use in children and young people.

18,029 children and young people (aged 2 to 19 years old) in England were asked to take part in the 2017 survey. Contact details were obtained from the NHS Patient Register. Information on 9,117 children and young people was collected from parents, children and teachers, and was examined by a team of clinical raters. Respondents which consented to recontact were followed up during the Covid pandemic of 2020. Sample numbers are not available at this point.
This agreement and subsequent access to data is to support quantitative analysis of the MHCYP 2017 and MHCYP survey 2020 follow up survey, to document in a nationally representative population of England . Attention will be paid to how the mental health of 2-19 year olds might vary and how individual outcomes may cluster together. Health inequalities will be explored by stratifying outcomes and clusters by sociodemographic profiles which can be targeted for intervention to improve quality of life by diminishing the impacts of poor mental health in childhood into adulthood.

The MHCYP 2017 and MHCYP 2020 follow up survey are unique. They are the first surveys of its kind for more than a decade, and so no other recent dataset is available. NatCen would be unable to achieve the aims of the research without these data. These data will yield national representative findings of the mental health of children and young people, exploring mental health and the risk factors underpinning it as a granular level which is not available elsewhere.

This agreement uses pseudonymised information from respondents to minimise the risks of individuals being identified.

NatCen require the MHCYP 2017 and MHCYP 2020 follow up data. It will not be possible to explore the impact of the Covid pandemic on the mental health of children and young people unless NatCen have data collected pre- and post-pandemic.

NatCen require nationally representative data to inform robust, evidence-based policy making. National data also provides the greatest sample size, minimising risk of disclosure of individuals as data will be aggregated by outcomes and population sub-groups.

The data requested has already been collected and therefore respondents will face no burden of research by this agreement. NatCen could not achieve the same purpose by processing less data. The methods are not intrusive as NatCen are not able to directly identify any individual in the data that NatCen process. Nothing identifiable is published.

The data is available as a single extract. Any identifying information pertaining to respondents has been removed from the extract prior to being archived and finalised.

NatCen is the data controller and data processor.

NatCen have generated research proposals/ideas and Mind (the mental health charity) have offered to support that with some funding to answer some specific policy-based research questions. Ultimately, responsibility for the findings and interpretation of the data will be solely NatCen’s - Mind are not a data controller.

Expected Benefits:

Health and social care service providers need to understand how many children in the population experience symptoms and whether this has changed following the Covid 19 pandemic. Importantly, this project will identify what proportion - and which sub-groups of the population - receives treatment or support now compared to prior to the pandemic. Without this basic understanding of changing demands on existing services it is hard for health and education services to prioritise and plan services in a post-pandemic world.

More efficient and equitable provision of mental health services and early identification of children and young people before they enter mental health care systems will significantly reduce the transfer of poor mental health from childhood to adulthood freeing up resource to the wider health concerns and needs of the general population.

These outputs will identify the characteristics of children and young people who have existing mental health needs, and highlight how these needs might cluster and interact to form more severe mental illness and greater levels of costly service provision. Additional attention can be paid to these high risk groups by allocation of more resource, or diversion of resource away from other groups with lesser needs with scope for reduction in service provision. The findings will highlight which children and young people are at greatest risk of these poor outcomes, and identify who was under-served by existing services and who will be under-served by the post-Covid context.

There is no other data source available in any UK context that can provide this detail at a nationally representative level on the mental health needs of children and young people. Further, this data has already been collected and its exploitation confers no additional research burden on the participants. To not exploit these data is to fail the respondents who voluntarily shared their information for research purposes.

These outputs will provide mental health service providers the evidence they need to plan for servicing the existing mental health needs of children and young people as well offer them early insight into emerging trends from the effects of the Covid 19 pandemic. The benefits are social, moral and economic. The benefits are social - 75% of mental health problems in adult life (excluding dementia) start by the age of 18. Failure to support children and young people with mental health needs costs lives and money. Early intervention avoids young people falling into crisis and avoids expensive and longer term interventions in adulthood. There is also the moral obligation to do, as a society, what it can to ensure that all members have a decent quality of life and that they have the capability to fulfill their capacity. Early life poor mental health hinders that goal, but these data can inform who is most at risk of poor mental health, why, and what might be put in place to alleviate ill health as well as protect others. The cost savings at re-tuning existing services in terms of content or scale will be of considerable benefit to the Treasury. The economic cost of poor mental health in young people’s has been estimated at 5.3 billion pounds for a single cohort of children in the UK (Future in Mind, 2015).

These findings will be disseminated to existing stakeholder groups who already have strong lobbying position with politicians and policymakers. Evidence of benefit of this research will be seen in emerging policy announcement which are increasingly reliant on data to back their approaches. The anticipated returns on this evidence production are expected within the next 5 years as the impact of the Covid pandemic on a generation of young people becomes fully evident, as does the toll it has taken on their mental health which these data will describe.

This study will be completed by existing employees at NatCen Social Research; there is no student involvement.

Outputs:

What will be produced as a result of the data processing.

a. Reports
A single 30 page report outlining key findings supported by additional data tables which have been checked by researchers accredited with the safe handling of secure data to reduce risks of data disclosure. The report will be published by the funding agency, Mind, and hosted on the NatCen website. The anticipated publication date is February 2021.

NatCen will work with Mind on a stakeholder engagement event, convening existing networks such as the Children and Young People's Mental Health Coalition, the Association for Young People’s Health, Young Minds and the Centre for Mental Health. The aim is to publicise these findings through these stakeholder media channels to raise public awareness and for the public to learn about the young people’s mental health and how it can be promoted and protected. The further aim is to use this stakeholder network to reach policymakers with the means to implement changes which will improve on and protect the young lives of children and young people who have or are vulnerable to poor mental health.

Submissions to peer reviewed journals.

NatCen will submit the findings to peer-reviewed journals (if applicable) with anticipated publication Winter 2021.

b. Presentations
NatCen intended to present findings to the charity Mind and its trustees who are aiming at influencing policymakers through their existing networks. NatCen researchers often attend and present to Parliamentary APPGs and will target attendees at the APPG on Mental Health. Anticipated Spring 2021.
c. Conferences
NatCen will engage researchers through academic conferences and will target the annual conference of the Royal College of Paediatrics and Child Health and the MQ Mental Health annual conference. Anticipated Autumn 2021.
d. Dashboards
All findings will be hosted on the NatCen website.

Outputs will be aggregated at population and population sub-group levels (e.g. age groups, ethnicity, gender). Cell counts below 25 are routinely supressed for publication via case borrowing across cells, collapsing into neighbouring cells or through simple exclusion whereby cell counts cannot be deduced from other published findings.

This research will deploy conventional epidemiological statistical methods. NatCen do not anticipate any technological innovation during this project. Funders do not expect innovation or knowledge transfers.

Processing:

All organisations party to this agreement must comply with the Data Sharing Framework Contract requirements, including those regarding the use (and purposes of that use) by “Personnel” (as defined within the Data Sharing Framework Contract ie: employees, agents and contractors of the Data Recipient who may have access to that data)”

There will be no flow of data between Natcen and NHS Digital. NatCen prepare the MHCYP datasets on behalf of NHS Digital - therefore access can be facilitated internally subject to a valid data sharing agreement being in place.
Data will be downloaded from the UKDS (UK Data Service)

NatCen will receive the whole standard datasets as there is no facility to select individual variables. Access will be permitted for the period specified within the DSA and NatCen must securely destroy all local copies of the dataset when the DSA expires and notify DARS in line with standard procedures.

For both datasets, all identifying information has been removed prior to being archived in the final dataset. Should any potentially disclosive information be uncovered during processing then these data will be suppressed from publication; no further data linkage shall take place.

NatCen researchers accessing the data have been trained in statistical disclosure control by the ONS and NatCen confirm that no attempts to de-identify respondents will be made.

No third parties will have access to the datasets.

All data will be securely contained on NatCen servers which are inaccessible to all except employees or contracted associates. Remote access to NatCen IT systems is available to employees via the NatCen encrypted Virtual Private Network. Data will not be stored by any organisation not named on the data agreement.

NatCen is responsible for processing data at the single stage and will store these data securely for the agreed period and not share it with any third parties. Data will only be accessed by individuals within NatCen who have authorisation to access the data for the purposes described, all of whom work for NatCen.
How the data is being processed at each stage/what is being done with the data to achieve the stated purpose

-What will be done with the data:
1.The data will not be linked with any other data outside of the MHCYP surveys.
2.There will be no requirement nor attempt to re-identify individuals from the data.
3.The data will not be made available to any third parties except in the form of aggregated outputs with small numbers suppressed in line with the HES Analysis Guide.

MHCYP and the Covid-19 follow up are only available as full datasets, though minimisation has taken place centrally prior to the dataset being made available. In addition, the full dataset is required in order to cover all of England (national analyses) and to be able to control for a range of factors in the analyses. A range of conditions will be examined in the analyses.

Data management and variable derivation will be done in SPSS and Stata statistical software packages. Analyses will be conducted in Stata and R, using survey weights and controlling for complex survey design. All patterns reported on will be tested for statistical significance.

Simple descriptive analyses will be used to generate prevalence rates and produce cross-tabulations. These will be presented in tabulations (using percentages and means, and showing base sizes), bar charts, and line graphs. Trend data (from comparisons with earlier surveys in the series) will be based on consistently defined age-ranges and geography for comparability across years. Multiple regression analyses will be carried out to examine association between risk factors and mental health outcomes or service and treatment access when other factors are controlled for, and to identify the role of different potential mediators or explanatory factors. Population attributable fractions may be calculated to compare risk factors with variable extent and variable strength of association. NatCen will examine different options for testing what risk factors may be driving any changes in rate or distribution of mental illness or treatment and service use access. Latent class analyses may be conducted to profile how different and multiple adversities across mental health and other life circumstances cluster together.

While the focus of the study is the mental health and service and treatment use of children and young people, these patterns will be considered in relation to family, neighbourhood and school context. Where available in the dataset, analyses will be conducted on data from children, parents and teachers, so that comparisons can be made. All of the information on family, neighbourhood and school context (teachers) is in the data already. No linkage is made to any other data.

The scope of the analyses will be entirely conducted by NatCen and the data will only be used for the purposes described in this agreement.