Children and young people’s mental health, its changes over time and its relationship with the family ecosystem

The University of Manchester requires access to NHS England data for the purpose of the following research project: “Children and young people’s mental health, its changes over time and its relationship with the family ecosystem”.

Aims of study…

1. Investigate trends, by demographic characteristics, in the proportion of CYP with: poor self- and parent-reported mental health; presenting to, and treated in, primary and secondary care for mental health problems.

2. Examine whether there are subgroups for which there are particularly large increases in the number presenting to services or the number with symptoms of distress.

3. Examine how gender and ethnicity affects the difference between the proportion with symptoms of distress (measured through survey) and the proportion who are seen in services.

4. Investigate whether the COVID-19 pandemic has affected the relationship rates of between mental health symptoms and treatment.

5. Investigate network effects between symptoms between children and their primary care giver

Intended analyses…

1. Investigate trends in mental health in CYP since 1999, by demographic subgroups of ethnicity and gender. These will be cross-referenced against analysis that is being undertaken by the research group of primary care data, using the Clinical Practice Research Datalink (CPRD). This process will not involve any direct linkage of data, rather the comparison will be of aggregated data and statistical measures (expected delivery date, July 2023).

2. Examine the link between a child’s mental health and that of the primary care giver. This will be examined using network models, where nodes on the network will represent mental health symptoms of the child or parent and the edges will represent partial correlations across nodes. This will provide a detailed mapping of the interdependencies of mental health between children and their primary care giver. (Expected delivery date, July 2025).

3. Investigate the specific effects of the pandemic on children’s mental health. University of Manchester will compare mental health of children before the pandemic (using the 2017 wave of data) with that measured on the same children during the pandemic (using the 2020 data). This will be examined as changes on a network, to represent the multifactorial process of change (expected delivery date, July 2027).

The following NHS England data will be accessed:

• Mental Health of Children and Young People (MHCYP) survey- 2017 and 2020.

The level of the data will be pseudonymised.

MHCYP is only available as a full dataset, thorough minimisation has taken place centrally prior to the dataset being made available. In addition, the full dataset is required in order to cover all England (national analyses) and to be able to control for a range of factors in the analyses, for example gender, ethnicity and parental age. A range of conditions will be examined in the analyses, for example phobia’s, body dysmorphia, attachment disorder and eating disorder.

The University of Manchester is the controller and the organisation responsible for ensuring that the data will only be processed for the purpose described above.

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 it adheres to the UK Policy Framework for Health and Social Care Research, which protects and promotes the interests of patients, service users and the public, and aims to produce generalisable and publicly available information to inform future decisions over patients’ treatments or care.

The funding comes from multiple sources. Current joint funders include:

· The Royal Society– Funding is in place until 10/09/2027.

· Wellcome Trust – Funding is in place until 10/09/2027.

Funding to continue the work described will be sought on an ongoing basis.

No data will flow into NHS England for the purposes of this Agreement.

The MHCYP data is held on behalf of NHS England at the UK Data Service (UKDS) and UKDS are they are responsible for its dissemination under direction by NHS England. The data will contain no direct identifying data items. The data will be pseudonymised and individuals cannot be reidentified through linkage with other data in the possession of the recipient.

The data will not be transferred to any other location.

The data will be stored on servers at the University of Manchester.

The data will be accessed onsite at the premises of the University of Manchester only.

The data will not leave England at any time.

Access is restricted to individuals within the University of Manchester who have authorisation from the Principal Investigator. All such individuals are substantive employees of the University of Manchester.

All personnel accessing the data have been appropriately trained in data protection and confidentiality.

The data will not be linked with any other data.

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

Researchers from the University of Manchester will process the data for the purposes described above.

The expected outputs of the processing will be:

• Submissions to 2-3 peer reviewed journals, expected to be delivered within 3 years.

• Potentially presentations at specific conferences, however nothing has been confirmed yet.

The outputs will not contain NHS England data and will only contain aggregated information with small numbers suppressed as appropriate in line with the relevant disclosure rules for the dataset(s) from which the information was derived.

The outputs will be communicated to relevant recipients through the following dissemination channels:

• Journals

• Social media

• Press release, using the University of Manchester’s press office. This is expected to be published in national press.

• Potentially webinars and posters

The first of these journals are expected to be published in July 2023, the second in July 2025 and the third in July 2027.

The findings of this research study are expected to contribute to evidence-based decision-making for policymakers, local decision-makers such as doctors, and patients to inform best practice to improve the care, treatment, and experience of health care users relevant to the subject matter of the study.

The use of the data could also:

• Help the system to better understand the health and care needs of populations.

• Advance understanding of regional and national trends in health and social care needs.

• Support knowledge creation or exploratory research (and the innovations and developments that might result from that exploratory work).

The ultimate beneficiaries are expected to be children and young people themselves, by providing information that can feed into interventions to help improve their mental health. As part of the fellowship application process, a group of children and young people have been engaged with who have lived experience of mental illness. They fed back on aspects of the proposal and gave advice on how to communicate findings in a non-stigmatising way.

There are also benefits to survey participants. People took part in this survey for no reason other than that they wanted their views and experiences to inform research. They did not provide information as part of a service transaction, in order to access a diagnosis or treatment or services. They chose to take part in the survey to inform research.

It is hoped that through 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.

As part of the fellowship, The University of Manchester will be engaging with a group of children and young people with experience of mental illness to talk about what the results mean to them, and how to best interpret the research in a way that resonates with them. The results that will be presented will be from aggregated data, as those published in journals will be. Their feedback will be invaluable in understanding whether the results will achieve their stated benefits. In addition, The University of Manchester will assess how many times the papers from the project will be referenced in academic papers, as a metric of how impactful the research is. Finally, there will be engagement throughout with key stakeholders, such as those who work in children and young people’s mental health services. The feedback from them shall be invaluable as to understanding whether they might have clinical benefit.

Yielded Benefits is not a requirement for new applications.