Tracking the impact of Covid-19 on the mental health of children, young people and families; follow up of a national longitudinal probability sample: follow-on interviews

University of Exeter · Academic

Expired The latest version ended on 15 August 2023. The September 2026 register still lists the agreement, but its term has passed.

Reference: DARS-NIC-402080-N3V5Z
Latest version: v2.3
Term of latest version: 9 September 2022 to 15 August 2023
Start date: 15 April 2021
Data controller: Joint Data Controller
Commercial purposes: No
Sublicensing: No
Files released to date: 2

Data controllers

Why the data was released

Objective for processing

The objective for processing is for the research team from the University of Exeter and University of Cambridge to contact participants from the Mental Health of Children and Young People in England (MHCYP) 2020 follow-up survey (also known as the National Study of Health and Wellbeing: Children and Young People 2020) and the MHCYP 2021 follow-up survey to invite them to take part in a follow-up research interview study. This follow-up research study forms part of a wider project called: "Tracking the impact of Covid-19 on the mental health of children, young people and families; follow up of a national longitudinal probability sample". The follow-up interviews are referred to as the RESHAPE study (REflecting on the impactS of covid-19 on cHildren And young People in England: exploring experiences of lockdown, service access and education) as this is more accessible for participants.

Participants include 600-1000 parents of children and young people themselves aged 5-23 who previously consented to be contacted for further research in the MHCYP 2020 and/or MHCYP 2021 surveys. The main aims of RESHAPE are:

RESHAPE Wave 1 Follow up interviews (with participants in MHCYP 2020)

• To explore the experiences of children, young people and parents of lockdown during the pandemic and the impact of school closures on children, young people and their families (led by the University of Cambridge)

• To examine mental health related service contacts in children and young people, both pre-pandemic and during the pandemic, and to explore the barriers and facilitators to seeking and receiving help (led by the University of Exeter)

RESHAPE Wave 2 Follow-up interviews (with participants from MHCYP 2021):

• To explore the experiences of children and young people with Special Education Needs and Disabilities (SEND) and their families during the Covid-19 pandemic (Follow-on interviews)

• To describe the prevalence of eating disorders, eating disordered behaviour and comorbid anxiety and depression symptoms amongst participants in MHCYP 2021 who screened positive for eating disorders in the survey, and to explore experiences of disordered eating during the pandemic and what support and coping strategies have been useful

The processing involves the names and contact details of participants in the MHCYP 2020 for Wave 1 and MHCYP 2021 for wave 2 who are eligible to take part in these interviews being securely passed by the National Centre for Social Research (NatCen) to the Universities of Cambridge and Exeter. The purpose is for the University teams to contact these participants to invite them to take part in the research interviews. The University teams will then take separate informed consent for participation in the follow-on research study interviews.

These research interviews form part of a project funded by the Medical Research Council through the UK Research and Innovation (UKRI) 2020 Covid-19 research call. The findings of the interviews will be shared in reports for policymakers such as the Department for Health and Social Care, the Department for Education, NHS England, Public Health England and Office of the Children’s Commissioner, Royal College of Psychiatrists and Royal College of Paediatrics and Child Health, and in publications for peer review.

Better information about the impact of Covid-19 on children and young people’s mental health, and how the lockdowns and restrictions affected them is crucial to mitigate the effects and support recovery, and to improve services and support for children and young people if there are further waves of Covid-19 or lockdowns in the future. Conducting patient and public involvement activities throughout this research will ensure the project is relevant and accessible, and that outcomes are accessible to schools and services. There are considerable benefits to collecting further data from the participants in MHCYP 2020 and MHCYP 2021, as this is the only well-characterised national probability sample of this age group carried out during Covid-19, rather than being a convenience sample.

Questions on eating difficulties and on SEND were only included in MHYCP 2021, and not in MHCYP 2020. The Amendment DARS-NIC-402080-N3V5Z-v1 is therefore required in order to collect further data from MHCYP 2021 participants. These two areas have been highlighted by stakeholders as being of major policy and practice importance, due to the rise in eating disorder referrals, and the concerns about support for children and young people with SEND during the pandemic.

The data controllers for this Agreement are the University of Cambridge and the University of Exeter. The data processors are NatCen, the University of Cambridge and the University of Exeter.

The GDPR lawful basis for the University of Exeter and the University of Cambridge to process this data 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 legal basis for the processing of special category data is GDPR Article 9 (2)(j), as 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 right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.

The funder is the Medical Research Council (MRC). NatCen are a partner in this project, and act as a data processor for the MHCYP 2020 and 2021 surveys for NHS Digital. Neither the MRC nor NatCen are involved in determining the purposes or the means of data processing. All participants in MHCYP 2020 and in MHCYP 2021 were asked for consent to be contacted about further research and surveys.

Only those who agreed to contact about future research will be contacted initially by NatCen with information (a brief flyer) about taking part in RESHAPE. The flyer will explain that unless the person opts-out, their contact details (name, phone number, address and email address) will be securely passed to the research team to allow the researchers to contact them with more information about the follow-on research. They will then be able to give separate informed consent about whether to participate in the interview study. People will have the choice to opt-out of having their contact details passed to the research team, by using a Freephone NatCen number.

It is necessary for the University teams to have contact details in order to directly contact participants to complete recruitment and take consent for the interviews. Good research practice suggests that those carrying out the research should take consent so that it is fully informed. It also replicates the method previously used in the follow-ups of the 1999 survey, which were acceptable across over 800 interviews. Participants in MHCYP 2020 and 2021 have already given consent to being contacted about further related research; hence, requiring that they opt-in consent to contact again on this occasion (within 1 year of the survey) represents an additional and unnecessary burden to them, which may result in a low response rate. The latter would jeopardise the main strength of the sample (i.e. its’ representative nature). Participants in MHCYP 2021 were asked about consent to contact about further research within the past six months, and hence asking for opt-in consent again also represents additional burden. The study team have full ethical approval from the University of Cambridge Psychology Research Ethics Committee for this procedure.

Processing activities

DATA FLOWS:

The MHCYP 2020 dataset is held on behalf of NHS Digital at NatCen and securely stored. Analysts from NatCen run an agreed algorithm to identify eligible participants for research interviews based on their characteristics as recorded in the MHCYP 2020 dataset. These characteristics include participants͛ responses to questions about their/their child’s contact with services, their/their child’s education participation and status, and their/their child’s experience of lockdown. These responses will determine whether MHCYP 2020 participants are invited to take part in the University of Cambridge interview about education and lockdown experiences, or the University of Exeter interview about experiences of seeking help during the pandemic and contact with services.

NatCen also hold the MHCYP 2021 dataset on behalf of NHS Digital, and analysts will use an algorithm to identify eligible participants for the Wave 2 research interviews, based on their characteristics. For Wave 2 research interviews, these characteristics include participants’ responses to the five ‘Eating Disorders’ screening questions which were included in MHCYP 2021, and their response to the question asking whether their child has Special Educational Needs and Disabilities.

With the proposed addition of Wave 2 interviews with MHYCP 2021 participants to this project, there are four interviews to which participants in Wave 1 (MHCYP 2020) and/or Wave 2 (MHCYP 2021) may be invited:

Service Contact Interviews (structured)– Wave 1 participants

Education/Lockdown Interviews (semi-structured) – Wave 1 participants

Eating Disorders Interviews (structured) – Wave 2 participants

SEND Interviews (semi-structured) – Wave 2 participants

Therefore, to reduce burden on participants and also ensure no-one is contacted unexpectedly by the research team, the research team will follow these principles:

Some participants will have taken part in MHCYP 2020 and MHCYP 2021, and are therefore potentially eligible for both Wave 1 and Wave 2 interviews. Although Wave 1 and Wave 2 interviews are likely to be separated by a period of several months due to the time required to access and process the MHCYP 2021 data, a standard approach will still be taken to reduce potential burden on participants. The team are also conscious that there may be further waves of the MHCYP survey. Therefore, the research team will also make it clear to all participants that this research project is related to, but is separate from the National Study of Health and Wellbeing: Children and Young People and any subsequent waves of follow-up that may take place from the survey. Therefore, if they decline to take part in the research project but have not opted-out or refused further contact from the National Study team, they may still be invited to participate in future waves.

The aim is to minimise the number of interviews to which participants are invited across the Wave 1 and Wave 2 interview phases. Participants would only be invited to one interview of the possible four, except where they are eligible for both the Service Contact Interview (SCI) in Wave 1 and the Eating Disorder Interview (EDI) in Wave 2. In this case, they would be invited to participate in both, as the SCI and EDI interviews are structured interviews/questionnaires which are intended to provide estimates of prevalence and to be as representative as possible. The SCI and EDI are therefore prioritised at each stage over the other two interview types. Children aged 16 and under would also only ever be invited to participate in one type of interview, as only their parents participate in the SCI.

Finally, those participating in the SCI in Wave 1 will be asked by the research team if they are willing to be contacted about taking part in a second research interview (the EDI) in Wave 2, should they be eligible. If they decline, NatCen will be notified, and the participant will be excluded from the Wave 2 sample.

The research team also will make it clear that opting in or out of contact about a second research interview relates to the University of Cambridge and University of Exeter research project, and is not related to any further follow-up waves of the MHCYP/National Study of Health and Wellbeing: Children and Young People, using the following form of wording:

“Thank you for taking part in this interview. We would like to ask if you are willing for researchers from the University of Cambridge to contact you about taking part in an additional research interview about eating behaviours and difficulties during the pandemic. If you agree, you may be contacted again by us, but you are free to decide later whether or not you would like to take part. If you would prefer not to be contacted by the University of Cambridge research team about this interview, please let us know. Please note that if you opt-out of further contact by the research team, you may still be contacted about the NHS Digital National Study of Health and Wellbeing: Children and Young People, as this is a separate study.”

The following principles will apply to sampling for Wave 1 interviews :

If participants are eligible for the SCI in Wave 1, they will be excluded from the ELI in Wave 1.

All Wave 1 participants who are not eligible for the SCI interview, but are eligible for the ELI, will first be screened for eligibility for the Wave 2 EDI interview. If they are eligible, they will not be invited for the ELI interview in Wave 1. Instead, they will be invited to the Wave 2 EDI interview when the identification and invitation process for Wave 2 interviews is carried out.

The following principles will apply to sampling for Wave 2 interviews:

If participants take part in either of the Wave 1 interviews (the Service Contact Interview (SCI) or the Education/Lockdown Interview (ELI )), they would be excluded from the SEND interview in Wave 2.

If participants are eligible for the EDI interview in Wave 2, they will be excluded from the SEND interview at Wave 2.

These principles result in participants being invited to only one interview, with the exception of the SCI/EDI overlap as explained above. At each point, the usual procedures apply regarding only contacting those who consented for further contact during the relevant survey, and allowing those contacted a period of time to opt-out before the research team get in touch.

DATA FLOWS:

For both Wave 1 and Wave 2, NatCen will transfer serial numbers, first names and surnames of eligible participants to NHS Digital using secure file transfer protocols for a check through the Personal Demographics Service (PDS). The serial numbers, names, most recent addresses, telephone numbers and email addresses alongside fact of death (if applicable) will be returned to NatCen. This will ensure that contact details are up-to-date, and that study invitation letters are not addressed to anyone who has passed away. This process will occur under the established data controller-data processor contract between NHS Digital and NatCen.

These data will only be accessed by individuals within NatCen who have authorisation to access the data for the purpose described, all of whom are employed by NatCen. NatCen will then use the contact details as recorded in the MHCYP 2020 and 2021 datasets to send information (a flyer) about the research interviews to these eligible participants , explaining the study. The flyer will explain that unless the person opts-out, their contact details (name, phone number, email address, and postal address) will be securely passed to the research team to allow the researchers to contact them with more information about the follow-on research. They will then be able to give separate informed consent about whether to participate in the interview study. People will have the choice to opt-out of having their contact details passed to the research team, by using a Freephone NatCen number. NatCen will then delete the names and data of participants who opt-out of their contact details being passed to the research teams, from their list of eligible participants. The Universities of Cambridge and Exeter have discussed this process with NatCen who agree that it is feasible.

The contact details of eligible participants who do not opt out will be securely passed to the research teams at the University of Cambridge and the University of Exeter, electronically via NatCen’s secure File Transfer Protocol (FTP) server. The University of Exeter will receive contact details for all participants meeting the criteria for the service contact (SC) interviews. The University of Cambridge will receive contact details for all remaining participants eligible for all other interviews.

These data passed to the University of Exeter and University of Cambridge will be the minimum data necessary to effectively contact participants in relation to the planned purposive sample; names, telephone numbers, addresses and email addresses. NatCen will also indicate the age band of the index child or young person (e.g. 5-10 years, 11-16 years, 17-23 years) and whether the contact details are for a young person aged 17-23 or a parent, in order for the Universities of Cambridge and Exeter to send them the appropriate information about taking part (an information sheet about the study and a consent form). No other data collected from the survey will be passed on with these details– i.e. there will be no individual-level data on participants’ characteristics, mental health, socio-economic background etc. from the survey accompanying the contact details. Participants contacted using their provided email addresses will be via the secure NHS Mail service.

DATA ACCESS:

The University of Exeter and the University of Cambridge will store this data securely until potential interview participants have been approached and consented/not consented and not share it with any third parties. This data will be stored in the University of Exeter and University of Cambridge secure data environments, which can be securely accessed remotely. Data cannot be exported from these environments without going through a checking procedure to ensure it is not identifiable in any way, and the environments also include logging procedures of who has accessed the data. Only named members of the study team who are substantive employees of the university and have been appropriately trained in data protection and confidentiality will have access to the data. The secure environments allow data to be kept in password protected subfolders, to which access can only be gained by authorised members of the team who require access to that subfolder. All data is regularly backed up on the University’s secure servers.

The University of Cambridge will store all personally identifiable data in the Secure Data Hosting Service (SDHS), managed by the Clinical School Computing Service in collaboration with the Information Governance Office. The SDHS is accessed via a Virtual Private Network (VPN) with 2 factor authentication. Data can only be transferred to and from the SDHS via the secure “air lock͟". All remote device access to the SDHS is screen view only.

Ingress and egress of confidential information to the University of Exeter’s Secure Data Research Hub (SDRH) are via an upload and download folder. No other ingress or egress is available. Remote access to the University of Exeter’s secure data environment is via multi-factor authentication VPN and is screen view only.

DATA PROCESSING:

Contact detail data will only be used to contact potential participants by email, telephone or post about the studies and invite them to interview. The study information sheet sent to potential participants will ask them to telephone or email the research team if they are interested in participating or in finding out more. After a ten day period, if they have not contacted the team, the team will email or telephone them with a reminder about the study. They will be reminded again after another two weeks, and again after another week. If they have not responded by that point, it will be assumed that they are not interested in participation.

Where participants consent to take part in the interviews, further data will be gathered from them which does not fall under this DARS access request and which will be managed in the usual way for research data in accordance with the General Data Protection Regulation, Data Protection Act, NHS Caldicott Principles, the Research Governance Framework for Health and Social Care, and all conditions of the Research Ethics Committee Approval. The contact data will not be linked with any other data from the MHCYP 2020 or 2021 survey or that gathered by the research team nor will it be made available to any third parties

Where participants do not consent, the contact details data will be securely deleted. The remaining contact details data will be held only for the length of the data sharing agreement with NHS Digital, and then deleted. Deletion of data will be logged in the audit trail that is kept by the Universities of Exeter and Cambridge in relation to this agreement, and data will be securely destroyed beyond ability to rebuild and reuse, following each University’s procedures, to assure this.

Expected output

An extension of 12 months is requested in order to allow the Universities of Cambridge and Exeter to retain the contact details data to continue approaching potential participants.

As there were delays to receiving the contact details from NHS Digital due to a backlog of data requests, this consequently delayed the start date for inviting participants, which had knock-on effects on the rest of the study due to limited researcher time.

This extension will allow the Universities of Cambridge and Exeter to complete all the follow-on interviews originally planned on a range of policy-relevant topics, including pandemic-related service contact, impact of lockdown on education, specific impacts on children and young people with Special Educational Needs and Disabilities, and eating disorders. The last two have been recently further highlighted as being areas of high policy relevance.

Early findings have already been presented in talks and conferences (e.g. at one on "Controlling Covid in Schools" with Department for Education and Department of Health and Social Care attendees) and papers are in preparation. Developing themes have been shared in a participant newsletter . Developing themes from our education in lockdown study have included: the impact of Covid on milestones and ‘missing out’, maintaining connections and connectivity during remote learning, and navigating transitions, including between remote and in-person learning as well as between settings. Completion of the interviews is expected to enable delivery of the following outputs.

• Reports focussed on education, (including the needs of children and young people with SEND) and on access to services during Covid-19, aimed at stakeholders including the Department of Health and Social Care, the Department for Education, NHS England, OHID and Office of the Children’s Commissioner, Royal College of Psychiatrists and Royal College of Paediatrics and Child Health (target date, spring 2023)

• Reports containing estimates of the prevalence of eating difficulties and eating disorders, aimed at stakeholders including NHS England, the Department for Health and Social Care and the Royal College of Psychiatrists and Royal College of Paediatrics and Child Health (target date, spring 2023)

• Briefings for Schools and Mental Health services and practitioners, containing key messages for service planning and learning to improve practice (target date, spring 2023)

• Submissions to peer reviewed journals including health and education journals. These may include: Child and Adolescent Mental Health, Lancet Psychiatry, School Mental Health, British Educational Research Journal (likely to be 4-6 papers, autumn 2022-summer 2023)

• Conference presentations to education, child health, and mental health conferences (in progress)

• Blogs and newsletter articles for practitioners and service planners, e.g. through the Association for Child and Adolescent Mental Health (ACAMH) (in progress)

• A lay summary of the major study findings on the public-facing website: https://dev.psychiatry.cam.ac.uk/reshape/ (spring 2023)

The outputs will include both quantitative and qualitative data – the quantitative data will be presented as aggregate outputs with any smaller numbers suppressed in line with statistical disclosure guidance.

Expected measurable benefits

This research has been funded in a competitive application to UK Research and Innovation (UKRI)/ Medical Research Council (MRC) as part of the 2020 Covid-19 research call, which demonstrates its value. Project partners on the application included the Department of Health and Social Care, NHS England, Public Health England (now UK Health Security Agency), the Children and Young People’s Mental Health Coalition, the Royal College of Psychiatrists and the Royal College of Paediatrics and Child Health, and the Department for Education. Their contributions have ensured that this research is designed to benefit those providing services and support to children, young people, and families. Involvement of these stakeholder groups in the project’s design is important as it will improve accessibility and relevance of the outcome reports.

Through this research, the Universities of Cambridge and Exeter will aim to:

• Understand experiences of mental health help-seeking during the pandemic, and the barriers and facilitators to receiving help

• Explore the impact of Lockdown, particularly of school closures on children, young people, and families, including on their mental health and their engagement with education, as well as describing education practices which were helpful and unhelpful during this period, focussing on mental health support and impacts.

• Understand experiences of disordered eating during the pandemic and what support and coping strategies have been useful

• Provide estimates of the prevalence of eating disorders and associated difficulties, for comparison with the MHCYP 2017 estimates, and for planning prevention and services

• Explore the experiences of children and young people with Special Educational Needs and Disabilities (SEND) and their families during the pandemic, and provide details of practices and support and services which were helpful and unhelpful

Provision of the contact details of consenting individuals from the populations of interest is vital in enabling the direct collection of further data to achieve these aims.

A better understanding of the impact of lockdown on children’s mental health, education and access to services is expected to directly benefit the provision of mental health care for children and young people. As above, reports will be produced on access to services. These are intended to include an exploration of the barriers and facilitators to seeking help for mental health concerns during the pandemic, as well as a description of the services that children, young people and parents used most frequently and their experiences of service contact (e.g. face to face and/or virtual). These reports are expected to provide a framework for those planning and running services across health, education and social care to address these factors and improve access to care for the most vulnerable. It is hoped that this will contribute to more accessible and acceptable services being offered should there be further waves of Covid-19, or should we be preparing for a future pandemic.

Similarly, brief reports will be produced on educational experiences and engagement and their impact on mental health and wellbeing. These are anticipated to be directly relevant to education policy-makers and schools wishing to plan for and mitigate the impact of any future closures. The published report to UKRI is beneficial to funders by detailing methods, project delivery and outcomes during the Covid-19 pandemic. It is hoped that subsequent peer-reviewed publications will allow other researchers to learn from this research and build upon it, to design further research to benefit children and young people. Summaries of the study’s findings will be prepared for separate stakeholders, focussed on practitioners and service planners in a variety of accessible formats such as presentations, blogs, podcasts and evidence-briefings.

Reports will be produced on the prevalence of eating disorder in those children and young people who experienced disordered eating behaviours during the pandemic. It is hoped this will enable service providers to have a clearer understanding of types of disordered eating behaviours experienced by children and young people and the type of support that is required for children, young people and families. This is an especially relevant component of the research given the rise in referrals for eating disorders that has been recently reported.

Reporting on the experiences of children and young people with SEND during the pandemic is expected to provide insights and information which can be used to help improve practice and support in the event of any future lockdowns, and in recovery from the pandemic.

The impact of the reports, papers, and stakeholder engagement is planned to be monitored through altmetrics, website hits and downloads, as well as noting contributions to policy meetings, committees and citation in policy documents. These benefits, in terms of impact on service planning, are expected to begin to be achieved during the first 12 months of this UKRI grant and to continue for the 12-24 months afterwards.

The Universities of Cambridge and Exeter are also conscious of the high public interest, and will work with young people and parents to co-develop accessible public content, again in the form of blogs and engagement with the media.

Benefits reported so far

There are no yielded benefits at the time of extension submission - some of the early findings of the Universities of Cambridge and Exeter have been presented at talks/conferences and in participant newsletters and have received feedback, but the main outputs which are anticipated to result in the outlined expected benefits are still in progress. In particular, contact with stakeholder groups e.g. Department of Health and Social Care, and Royal College of Psychiatrists, has underlined the high policy importance of the eating disorders study.

Datasets on the latest version

Legal basis for provision: Health and Social Care Act 2012 - s261(5)(d)

Datasets approved under DARS-NIC-402080-N3V5Z-v2.3
Dataset	Type of data	Sensitivity	Frequency	Confidential data
Mental Health of Children and Young People (MHCYP) Survey	Identifiable	Sensitive	One-Off	Consent (Reasonable Expectation)

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 2 files released under this agreement, across every version. About opt-outs

No files recorded as released under the latest version. 2 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-402080-N3V5Z-v2.3 9 September 2022 to 15 August 2023

Title: Tracking the impact of Covid-19 on the mental health of children, young people and families; follow up of a national longitudinal probability sample: follow-on interviews
Commercial: No
Sublicensing: No
Datasets: 1
Files released: 0

Datasets: Mental Health of Children and Young People (MHCYP) Survey

What changed from DARS-NIC-402080-N3V5Z-v1.3

Text removed is ~~struck through~~; text added is underlined. Unchanged paragraphs are summarised rather than repeated.

Fields changed from DARS-NIC-402080-N3V5Z-v1.3
Field	Was	Became
Start date	~~2021-09-16~~	2022-09-09
End date	~~2022-08-15~~	2023-08-15
Mental Health of Children and Young People (MHCYP) Survey: legal basis	~~Health and Social Care Act 2012 - s261 - 'Other dissemination of information'~~	Health and Social Care Act 2012 - s261(5)(d)

Objective for processing

[12 paragraphs unchanged] The data controllers for this application will be the University of Cambridge and the University of Exeter. The data processors will be NatCen, the University of Cambridge and the University of Exeter. The GDPR lawful basis for the University of Exeter and the University of Cambridge to process this data 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 legal basis for the processing of special category data is GDPR Article 9 (2)(j), for research or statistical purposes. The funder is the Medical Research Council (MRC). NatCen are a partner in this project, and act as data processors for the MHCYP 2020 and 2021 surveys for NHS Digital. Neither the MRC nor NatCen are involved in determining the purposes or the means of data processing. All participants in MHCYP 2020 and in MHCYP 2021 were asked for consent to be contacted about further research and surveys. The data controllers for this Agreement are the University of Cambridge and the University of Exeter. The data processors are NatCen, the University of Cambridge and the University of Exeter. The GDPR lawful basis for the University of Exeter and the University of Cambridge to process this data 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 legal basis for the processing of special category data is GDPR Article 9 (2)(j), as 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 right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject. The funder is the Medical Research Council (MRC). NatCen are a partner in this project, and act as a data processor for the MHCYP 2020 and 2021 surveys for NHS Digital. Neither the MRC nor NatCen are involved in determining the purposes or the means of data processing. All participants in MHCYP 2020 and in MHCYP 2021 were asked for consent to be contacted about further research and surveys. [2 paragraphs unchanged]

Expected output

The patient and public involvement (PPI) panel for the wider research study will assist in refining interview schedules and participant facing materials for the study. Any emerging themes and findings will be presented for feedback by the PPI panel. The panel will co-design the key messages for children, families, teachers and young people with the study team, as well as the public-facing outputs from the research. An extension of 12 months is requested in order to allow the Universities of Cambridge and Exeter to retain the contact details data to continue approaching potential participants. ~~The outputs from the research interviews are likely to include the following:~~ As there were delays to receiving the contact details from NHS Digital due to a backlog of data requests, this consequently delayed the start date for inviting participants, which had knock-on effects on the rest of the study due to limited researcher time. • Reports focussed on education, (including the needs of children and young people with SEND) and on access to services during Covid-19, aimed at stakeholders including the Department for Health and Social Care, the Department for Education, NHS England, Public Health England and Office of the Children’s Commissioner, Royal College of Psychiatrists and Royal College of Paediatrics and Child Health (target date, spring 2022) This extension will allow the Universities of Cambridge and Exeter to complete all the follow-on interviews originally planned on a range of policy-relevant topics, including pandemic-related service contact, impact of lockdown on education, specific impacts on children and young people with Special Educational Needs and Disabilities, and eating disorders. The last two have been recently further highlighted as being areas of high policy relevance. • Reports containing estimates of the prevalence of eating difficulties and eating disorders, aimed at stakeholders including NHS England, the Department for Health and Social Care and the Royal College of Psychiatrists and Royal College of Paediatrics and Child Health Early findings have already been presented in talks and conferences (e.g. at one on "Controlling Covid in Schools" with Department for Education and Department of Health and Social Care attendees) and papers are in preparation. Developing themes have been shared in a participant newsletter . Developing themes from our education in lockdown study have included: the impact of Covid on milestones and ‘missing out’, maintaining connections and connectivity during remote learning, and navigating transitions, including between remote and in-person learning as well as between settings. Completion of the interviews is expected to enable delivery of the following outputs. ~~• Briefings for Schools and Mental Health services and practitioners, containing key messages for service planning and learning to improve practice~~ • Reports focussed on education, (including the needs of children and young people with SEND) and on access to services during Covid-19, aimed at stakeholders including the Department of Health and Social Care, the Department for Education, NHS England, OHID and Office of the Children’s Commissioner, Royal College of Psychiatrists and Royal College of Paediatrics and Child Health (target date, spring 2023) ~~• Published report for the funder UKRI/MRC (target date, spring 2022)~~ • Reports containing estimates of the prevalence of eating difficulties and eating disorders, aimed at stakeholders including NHS England, the Department for Health and Social Care and the Royal College of Psychiatrists and Royal College of Paediatrics and Child Health (target date, spring 2023) • Submissions to peer reviewed journals including health and education journals. These may include: Child and Adolescent Mental Health, Lancet Psychiatry, School Mental Health, British Educational Research Journal (likely to be 4-6 papers, from autumn 2021-autumn 2022) • Briefings for Schools and Mental Health services and practitioners, containing key messages for service planning and learning to improve practice (target date, spring 2023) ~~• Presentations to stakeholders as named above~~ • Submissions to peer reviewed journals including health and education journals. These may include: Child and Adolescent Mental Health, Lancet Psychiatry, School Mental Health, British Educational Research Journal (likely to be 4-6 papers, autumn 2022-summer 2023) • Conference presentations to education, child health, and mental health conferences (in progress) • Blogs and newsletter articles for practitioners and service planners, e.g. through the Association for Child and Adolescent Mental Health (ACAMH) (in progress) • A lay summary of the major study findings on the public-facing website: https://dev.psychiatry.cam.ac.uk/reshape/ (spring 2023) [1 paragraph unchanged]

Expected measurable benefits

This research has been funded in a competitive application to UK Research [24 words unchanged] included the Department of Health and Social Care, NHS England, Public Health ~~England,~~ England (now UK Health Security Agency), the Children and Young People’s Mental Health Coalition, the Royal College of [47 words unchanged] important as it will improve accessibility and relevance of the outcome reports. [13 paragraphs unchanged]

Benefits reported

There are no yielded benefits at the time of Amendment submission. Contact details for Wave 1 participants were received by NatCen in late July 2021. Follow-up research interviews for MHCYP 2020 participants are underway. There are no yielded benefits at the time of extension submission - some of the early findings of the Universities of Cambridge and Exeter have been presented at talks/conferences and in participant newsletters and have received feedback, but the main outputs which are anticipated to result in the outlined expected benefits are still in progress. In particular, contact with stakeholder groups e.g. Department of Health and Social Care, and Royal College of Psychiatrists, has underlined the high policy importance of the eating disorders study.

Unchanged: Processing activities.

DARS-NIC-402080-N3V5Z-v1.3 16 September 2021 to 15 August 2022

Title: Tracking the impact of Covid-19 on the mental health of children, young people and families; follow up of a national longitudinal probability sample: follow-on interviews
Commercial: No
Sublicensing: No
Datasets: 1
Files released: 1

Datasets: Mental Health of Children and Young People (MHCYP) Survey

What changed from DARS-NIC-402080-N3V5Z-v0.5

Text removed is ~~struck through~~; text added is underlined. Unchanged paragraphs are summarised rather than repeated.

Fields changed from DARS-NIC-402080-N3V5Z-v0.5
Field	Was	Became
Start date	~~2021-04-15~~	2021-09-16
End date	~~2022-04-14~~	2022-08-15
Mental Health of Children and Young People (MHCYP) Survey: legal basis	~~Health and Social Care Act 2012 – s261(2)(b)(ii)~~	Health and Social Care Act 2012 - s261 - 'Other dissemination of information'
Mental Health of Children and Young People (MHCYP) Survey: sensitivity	~~Non-Sensitive~~	Sensitive

Objective for processing

The objective for processing is for the research team from the University [27 words unchanged] the National Study of Health and Wellbeing: Children and Young People 2020) and the MHCYP 2021 follow-up survey to invite them to take part in a follow-up research interview study. [60 words unchanged] lockdown, service access and education) as this is more accessible for participants. Participants include 600-1000 parents of children and young people themselves aged ~~5-22~~ 5-23 who previously consented to be contacted for further research in the ~~survey.~~ MHCYP 2020 and/or MHCYP 2021 surveys. The main aims of RESHAPE are: RESHAPE Wave 1 Follow up interviews (with participants in MHCYP 2020) [2 paragraphs unchanged] The processing involves the names and contact details of participants in the MHCYP 2020 who are eligible to take part in these interviews being securely passed by the National Centre for Social Research (NatCen) to the Universities of Cambridge and Exeter. The purpose is for the University teams to contact these participants to invite them to take part in the research interviews. The University teams will then take separate informed consent for participation in the follow-on research study interviews. RESHAPE Wave 2 Follow-up interviews (with participants from MHCYP 2021): • To explore the experiences of children and young people with Special Education Needs and Disabilities (SEND) and their families during the Covid-19 pandemic (Follow-on interviews) • To describe the prevalence of eating disorders, eating disordered behaviour and comorbid anxiety and depression symptoms amongst participants in MHCYP 2021 who screened positive for eating disorders in the survey, and to explore experiences of disordered eating during the pandemic and what support and coping strategies have been useful The processing involves the names and contact details of participants in the MHCYP 2020 for Wave 1 and MHCYP 2021 for wave 2 who are eligible to take part in these interviews being securely passed by the National Centre for Social Research (NatCen) to the Universities of Cambridge and Exeter. The purpose is for the University teams to contact these participants to invite them to take part in the research interviews. The University teams will then take separate informed consent for participation in the follow-on research study interviews. [1 paragraph unchanged] Better information about the impact of Covid-19 on children and young people’s mental health, and how the ~~lockdown~~ lockdowns and restrictions affected them is crucial to mitigate the ~~effects,~~ effects and support recovery, and to improve services and support for children and young people if [38 words unchanged] are considerable benefits to collecting further data from the participants in MHCYP ~~2020,~~ 2020 and MHCYP 2021, as this is the only well-characterised national probability sample of this age group carried out during Covid-19, rather than being a convenience sample. The data controllers for this application will be the University of Cambridge and the University of Exeter. The data processors will be NatCen, the University of Cambridge and the University of Exeter. The GDPR lawful basis for the University of Exeter and the University of Cambridge to process this data 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 legal basis for the processing of special category data is GDPR Article 9 (2)(j), for research or statistical purposes. The funder is the Medical Research Council (MRC). Questions on eating difficulties and on SEND were only included in MHYCP 2021, and not in MHCYP 2020. The Amendment DARS-NIC-402080-N3V5Z-v1 is therefore required in order to collect further data from MHCYP 2021 participants. These two areas have been highlighted by stakeholders as being of major policy and practice importance, due to the rise in eating disorder referrals, and the concerns about support for children and young people with SEND during the pandemic. NatCen are a partner in this project, and act as data processors for the MHCYP 2020 survey for NHS Digital. All participants in MHCYP 2020 were asked for consent to be contacted about further research and surveys. The data controllers for this application will be the University of Cambridge and the University of Exeter. The data processors will be NatCen, the University of Cambridge and the University of Exeter. The GDPR lawful basis for the University of Exeter and the University of Cambridge to process this data 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 legal basis for the processing of special category data is GDPR Article 9 (2)(j), for research or statistical purposes. The funder is the Medical Research Council (MRC). NatCen are a partner in this project, and act as data processors for the MHCYP 2020 and 2021 surveys for NHS Digital. Neither the MRC nor NatCen are involved in determining the purposes or the means of data processing. All participants in MHCYP 2020 and in MHCYP 2021 were asked for consent to be contacted about further research and surveys. [1 paragraph unchanged] It is necessary for the University teams to have contact details in [46 words unchanged] survey, which were acceptable across over 800 interviews. Participants in MHCYP 2020 and 2021 have already given consent to being contacted about further related research; hence, [35 words unchanged] would jeopardise the main strength of the sample (i.e. its’ representative nature). Participants in MHCYP 2021 were asked about consent to contact about further research within the past six months, and hence asking for opt-in consent again also represents additional burden. The study team have full ethical approval from the University of Cambridge Psychology Research Ethics Committee for this procedure.

Processing activities

[1 paragraph unchanged] The MHCYP 2020 dataset is held on behalf of NHS Digital at NatCen and securely stored. Analysts from NatCen ~~will~~ run an agreed algorithm to identify eligible participants for research interviews based on their characteristics as recorded in the MHCYP 2020 dataset. These characteristics include ~~participants’~~ participants͛ responses to questions about their/their child’s contact with services, their/their child’s education [39 words unchanged] about experiences of seeking help during the pandemic and contact with services. As the contact details in the dataset were last updated in June 2020, NatCen will firstly transfer serial numbers, first names and surnames of eligible participants to NHS Digital using secure file transfer protocols for a check through the Personal Demographics Service (PDS). The serial numbers, names, most recent addresses, telephone numbers and email addresses alongside fact of death (if applicable) will be returned to NatCen. This will ensure that contact details are up-to-date, and that study invitation letters are not addressed to anyone who has passed away. This process will occur under the established data controller-data processor contract between NHS Digital and NatCen. NatCen also hold the MHCYP 2021 dataset on behalf of NHS Digital, and analysts will use an algorithm to identify eligible participants for the Wave 2 research interviews, based on their characteristics. For Wave 2 research interviews, these characteristics include participants’ responses to the five ‘Eating Disorders’ screening questions which were included in MHCYP 2021, and their response to the question asking whether their child has Special Educational Needs and Disabilities. These data will only be accessed by individuals within NatCen who have authorisation to access the data for the purpose described, all of whom are employed by NatCen. NatCen will then use the contact details as recorded in the MHCYP 2020 dataset to send information (a flyer) about the research interviews to these eligible participants, explaining the study. The flyer will explain that unless the person opts-out, their contact details (name, phone number, email address, and postal address) will be securely passed to the research team to allow the researchers to contact them with more information about the follow-on research. They will then be able to give separate informed consent about whether to participate in the interview study. People will have the choice to opt-out of having their contact details passed to the research team, by using a Freephone NatCen number. NatCen will then delete the names and data of participants who opt-out of their contact details being passed to the research teams, from their list of eligible participants. The Universities of Cambridge and Exeter have discussed this process with NatCen who agree that it is feasible. With the proposed addition of Wave 2 interviews with MHYCP 2021 participants to this project, there are four interviews to which participants in Wave 1 (MHCYP 2020) and/or Wave 2 (MHCYP 2021) may be invited: The contact details of eligible participants who do not opt out will be securely passed to the research teams at the University of Cambridge and the University of Exeter, electronically via NatCen’s secure File Transfer Protocol (FTP) server. The University of Exeter will receive contact details for all participants meeting the criteria for the service contact interviews. The University of Cambridge will receive contact details for all remaining participants eligible for the education/lockdown interviews. These data will be the minimum data necessary to effectively contact participants in relation to the planned purposive sample; names, telephone numbers, addresses and email addresses. NatCen will also indicate whether the participant is a young person aged 17-22 or a parent, in order for the Universities of Cambridge and Exeter to send them the appropriate information about taking part (an information sheet about the study and a consent form). No other data collected from the survey will be passed on with these details– i.e. there will be no data on participants’ characteristics, mental health, socio-economic background etc. from the survey accompanying the contact details. Participants contacted using their provided email addresses will be via the secure NHS Mail service. Service Contact Interviews (structured)– Wave 1 participants Education/Lockdown Interviews (semi-structured) – Wave 1 participants Eating Disorders Interviews (structured) – Wave 2 participants SEND Interviews (semi-structured) – Wave 2 participants Therefore, to reduce burden on participants and also ensure no-one is contacted unexpectedly by the research team, the research team will follow these principles: Some participants will have taken part in MHCYP 2020 and MHCYP 2021, and are therefore potentially eligible for both Wave 1 and Wave 2 interviews. Although Wave 1 and Wave 2 interviews are likely to be separated by a period of several months due to the time required to access and process the MHCYP 2021 data, a standard approach will still be taken to reduce potential burden on participants. The team are also conscious that there may be further waves of the MHCYP survey. Therefore, the research team will also make it clear to all participants that this research project is related to, but is separate from the National Study of Health and Wellbeing: Children and Young People and any subsequent waves of follow-up that may take place from the survey. Therefore, if they decline to take part in the research project but have not opted-out or refused further contact from the National Study team, they may still be invited to participate in future waves. The aim is to minimise the number of interviews to which participants are invited across the Wave 1 and Wave 2 interview phases. Participants would only be invited to one interview of the possible four, except where they are eligible for both the Service Contact Interview (SCI) in Wave 1 and the Eating Disorder Interview (EDI) in Wave 2. In this case, they would be invited to participate in both, as the SCI and EDI interviews are structured interviews/questionnaires which are intended to provide estimates of prevalence and to be as representative as possible. The SCI and EDI are therefore prioritised at each stage over the other two interview types. Children aged 16 and under would also only ever be invited to participate in one type of interview, as only their parents participate in the SCI. Finally, those participating in the SCI in Wave 1 will be asked by the research team if they are willing to be contacted about taking part in a second research interview (the EDI) in Wave 2, should they be eligible. If they decline, NatCen will be notified, and the participant will be excluded from the Wave 2 sample. The research team also will make it clear that opting in or out of contact about a second research interview relates to the University of Cambridge and University of Exeter research project, and is not related to any further follow-up waves of the MHCYP/National Study of Health and Wellbeing: Children and Young People, using the following form of wording: “Thank you for taking part in this interview. We would like to ask if you are willing for researchers from the University of Cambridge to contact you about taking part in an additional research interview about eating behaviours and difficulties during the pandemic. If you agree, you may be contacted again by us, but you are free to decide later whether or not you would like to take part. If you would prefer not to be contacted by the University of Cambridge research team about this interview, please let us know. Please note that if you opt-out of further contact by the research team, you may still be contacted about the NHS Digital National Study of Health and Wellbeing: Children and Young People, as this is a separate study.” The following principles will apply to sampling for Wave 1 interviews : If participants are eligible for the SCI in Wave 1, they will be excluded from the ELI in Wave 1. All Wave 1 participants who are not eligible for the SCI interview, but are eligible for the ELI, will first be screened for eligibility for the Wave 2 EDI interview. If they are eligible, they will not be invited for the ELI interview in Wave 1. Instead, they will be invited to the Wave 2 EDI interview when the identification and invitation process for Wave 2 interviews is carried out. The following principles will apply to sampling for Wave 2 interviews: If participants take part in either of the Wave 1 interviews (the Service Contact Interview (SCI) or the Education/Lockdown Interview (ELI )), they would be excluded from the SEND interview in Wave 2. If participants are eligible for the EDI interview in Wave 2, they will be excluded from the SEND interview at Wave 2. These principles result in participants being invited to only one interview, with the exception of the SCI/EDI overlap as explained above. At each point, the usual procedures apply regarding only contacting those who consented for further contact during the relevant survey, and allowing those contacted a period of time to opt-out before the research team get in touch. DATA FLOWS: For both Wave 1 and Wave 2, NatCen will transfer serial numbers, first names and surnames of eligible participants to NHS Digital using secure file transfer protocols for a check through the Personal Demographics Service (PDS). The serial numbers, names, most recent addresses, telephone numbers and email addresses alongside fact of death (if applicable) will be returned to NatCen. This will ensure that contact details are up-to-date, and that study invitation letters are not addressed to anyone who has passed away. This process will occur under the established data controller-data processor contract between NHS Digital and NatCen. These data will only be accessed by individuals within NatCen who have authorisation to access the data for the purpose described, all of whom are employed by NatCen. NatCen will then use the contact details as recorded in the MHCYP 2020 and 2021 datasets to send information (a flyer) about the research interviews to these eligible participants , explaining the study. The flyer will explain that unless the person opts-out, their contact details (name, phone number, email address, and postal address) will be securely passed to the research team to allow the researchers to contact them with more information about the follow-on research. They will then be able to give separate informed consent about whether to participate in the interview study. People will have the choice to opt-out of having their contact details passed to the research team, by using a Freephone NatCen number. NatCen will then delete the names and data of participants who opt-out of their contact details being passed to the research teams, from their list of eligible participants. The Universities of Cambridge and Exeter have discussed this process with NatCen who agree that it is feasible. The contact details of eligible participants who do not opt out will be securely passed to the research teams at the University of Cambridge and the University of Exeter, electronically via NatCen’s secure File Transfer Protocol (FTP) server. The University of Exeter will receive contact details for all participants meeting the criteria for the service contact (SC) interviews. The University of Cambridge will receive contact details for all remaining participants eligible for all other interviews. These data passed to the University of Exeter and University of Cambridge will be the minimum data necessary to effectively contact participants in relation to the planned purposive sample; names, telephone numbers, addresses and email addresses. NatCen will also indicate the age band of the index child or young person (e.g. 5-10 years, 11-16 years, 17-23 years) and whether the contact details are for a young person aged 17-23 or a parent, in order for the Universities of Cambridge and Exeter to send them the appropriate information about taking part (an information sheet about the study and a consent form). No other data collected from the survey will be passed on with these details– i.e. there will be no individual-level data on participants’ characteristics, mental health, socio-economic background etc. from the survey accompanying the contact details. Participants contacted using their provided email addresses will be via the secure NHS Mail service. DATA ACCESS: [1 paragraph unchanged] The University of Cambridge will store all personally identifiable data in the [13 words unchanged] collaboration with the Information Governance Office. The SDHS is accessed via a ~~VPN~~ Virtual Private Network (VPN) with 2 factor authentication. Data can only be transferred to and from the SDHS via the secure “air ~~lock”.~~ lock͟". All remote device access to the SDHS is screen view only. [3 paragraphs unchanged] Where participants consent to take part in the interviews, further data will be gathered from them which does not fall under this ~~data sharing agreement~~ DARS access request and which will be managed in the usual way for research data [35 words unchanged] will not be linked with any other data from the MHCYP 2020 or 2021 survey or that gathered by the research team nor will it be made available to any third ~~parties.~~ parties [1 paragraph unchanged]

Expected output

[2 paragraphs unchanged] • Reports focussed on ~~education~~ education, (including the needs of children and young people with SEND) and on access to services during Covid-19, aimed at stakeholders including the [23 words unchanged] of Psychiatrists and Royal College of Paediatrics and Child Health (target date, ~~autumn 2021)~~ spring 2022) • Reports containing estimates of the prevalence of eating difficulties and eating disorders, aimed at stakeholders including NHS England, the Department for Health and Social Care and the Royal College of Psychiatrists and Royal College of Paediatrics and Child Health [1 paragraph unchanged] • Published report for the funder ~~UK Research and Innovation (UKRI)/ Medical Research Council (MRC)~~ UKRI/MRC (target date, spring 2022) • Submissions to peer reviewed journals including health and education journals. These [7 words unchanged] Lancet Psychiatry, School Mental Health, British Educational Research Journal (likely to be ~~3-4~~ 4-6 papers, from autumn ~~2021-spring~~ 2021-autumn 2022) [5 paragraphs unchanged]

Expected measurable benefits

[4 paragraphs unchanged] • Understand experiences of disordered eating during the pandemic and what support and coping strategies have been useful • Provide estimates of the prevalence of eating disorders and associated difficulties, for comparison with the MHCYP 2017 estimates, and for planning prevention and services • Explore the experiences of children and young people with Special Educational Needs and Disabilities (SEND) and their families during the pandemic, and provide details of practices and support and services which were helpful and unhelpful [1 paragraph unchanged] A better understanding of the impact of lockdown on children’s mental health, education and access to services ~~should~~ is expected to directly benefit the provision of mental health care for children and young people. As above, reports will be produced on access to services. These ~~will~~ are intended to include an exploration of the barriers and facilitators to seeking help for [25 words unchanged] experiences of service contact (e.g. face to face and/or virtual). These reports ~~will~~ are expected to provide a framework for those planning and running services across health, education [35 words unchanged] waves of Covid-19, or should we be preparing for a future pandemic. Similarly, brief reports will be produced on educational experiences and engagement and their impact on mental health and wellbeing. These ~~will~~ are anticipated to be directly relevant to education policy-makers and schools wishing to plan for [49 words unchanged] design further research to benefit children and young people. Summaries of the ~~study's~~ study’s findings will be prepared for separate stakeholders, focussed on practitioners and service planners in a variety of accessible formats such as presentations, blogs, podcasts and ~~evidence- briefings.~~ evidence-briefings. The impact of the reports, papers, and stakeholder engagement will be monitored through altmetrics, website hits and downloads, as well as noting contributions to policy meetings, committees and citation in policy documents. These benefits, in terms of impact on service planning, are expected to begin to be achieved during the first 12 months of this UKRI grant and to continue for the 12-24 months afterwards. Reports will be produced on the prevalence of eating disorder in those children and young people who experienced disordered eating behaviours during the pandemic. It is hoped this will enable service providers to have a clearer understanding of types of disordered eating behaviours experienced by children and young people and the type of support that is required for children, young people and families. This is an especially relevant component of the research given the rise in referrals for eating disorders that has been recently reported. Reporting on the experiences of children and young people with SEND during the pandemic is expected to provide insights and information which can be used to help improve practice and support in the event of any future lockdowns, and in recovery from the pandemic. The impact of the reports, papers, and stakeholder engagement is planned to be monitored through altmetrics, website hits and downloads, as well as noting contributions to policy meetings, committees and citation in policy documents. These benefits, in terms of impact on service planning, are expected to begin to be achieved during the first 12 months of this UKRI grant and to continue for the 12-24 months afterwards. [1 paragraph unchanged]

Benefits reported

~~Yielded Benefits is not a requirement for new applications.~~ There are no yielded benefits at the time of Amendment submission. Contact details for Wave 1 participants were received by NatCen in late July 2021. Follow-up research interviews for MHCYP 2020 participants are underway.

Objective for processing

RESHAPE Wave 1 Follow up interviews (with participants in MHCYP 2020)

RESHAPE Wave 2 Follow-up interviews (with participants from MHCYP 2021):

• To explore the experiences of children and young people with Special Education Needs and Disabilities (SEND) and their families during the Covid-19 pandemic (Follow-on interviews)

The data controllers for this application will be the University of Cambridge and the University of Exeter. The data processors will be NatCen, the University of Cambridge and the University of Exeter. The GDPR lawful basis for the University of Exeter and the University of Cambridge to process this data 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 legal basis for the processing of special category data is GDPR Article 9 (2)(j), for research or statistical purposes. The funder is the Medical Research Council (MRC). NatCen are a partner in this project, and act as data processors for the MHCYP 2020 and 2021 surveys for NHS Digital. Neither the MRC nor NatCen are involved in determining the purposes or the means of data processing. All participants in MHCYP 2020 and in MHCYP 2021 were asked for consent to be contacted about further research and surveys.

Expected output

The outputs from the research interviews are likely to include the following:

• Reports focussed on education, (including the needs of children and young people with SEND) and on access to services during Covid-19, aimed at stakeholders including the Department for Health and Social Care, the Department for Education, NHS England, Public Health England and Office of the Children’s Commissioner, Royal College of Psychiatrists and Royal College of Paediatrics and Child Health (target date, spring 2022)

• Briefings for Schools and Mental Health services and practitioners, containing key messages for service planning and learning to improve practice

• Published report for the funder UKRI/MRC (target date, spring 2022)

• Presentations to stakeholders as named above

• Conference presentations to education, child health, and mental health conferences

• Blogs and newsletter articles for practitioners and service planners, e.g. through the Association for Child and Adolescent Mental Health (ACAMH)

• A lay summary of the major study findings on the public-facing website: https://dev.psychiatry.cam.ac.uk/reshape/

Benefits reported

DARS-NIC-402080-N3V5Z-v0.5 15 April 2021 to 14 April 2022

Title: Tracking the impact of Covid-19 on the mental health of children, young people and families; follow up of a national longitudinal probability sample: follow-on interviews
Commercial: No
Sublicensing: No
Datasets: 1
Files released: 1

Datasets: Mental Health of Children and Young People (MHCYP) Survey

Objective for processing

The objective for processing is for the research team from the University of Exeter and University of Cambridge to contact participants from the Mental Health of Children and Young People in England (MHCYP) 2020 follow-up survey (also known as the National Study of Health and Wellbeing: Children and Young People 2020) to invite them to take part in a follow-up research interview study. This follow-up research study forms part of a wider project called: "Tracking the impact of Covid-19 on the mental health of children, young people and families; follow up of a national longitudinal probability sample". The follow-up interviews are referred to as the RESHAPE study (REflecting on the impactS of covid-19 on cHildren And young People in England: exploring experiences of lockdown, service access and education) as this is more accessible for participants.

Participants include 600-1000 parents of children and young people themselves aged 5-22 who previously consented to be contacted for further research in the survey. The main aims of RESHAPE are:

The processing involves the names and contact details of participants in the MHCYP 2020 who are eligible to take part in these interviews being securely passed by the National Centre for Social Research (NatCen) to the Universities of Cambridge and Exeter. The purpose is for the University teams to contact these participants to invite them to take part in the research interviews. The University teams will then take separate informed consent for participation in the follow-on research study interviews.

Better information about the impact of Covid-19 on children and young people’s mental health, and how the lockdown affected them is crucial to mitigate the effects, and to improve services and support for children and young people if there are further waves of Covid-19 or lockdowns in the future. Conducting patient and public involvement activities throughout this research will ensure the project is relevant and accessible, and that outcomes are accessible to schools and services. There are considerable benefits to collecting further data from the participants in MHCYP 2020, as this is the only well-characterised national probability sample of this age group carried out during Covid-19, rather than being a convenience sample.

NatCen are a partner in this project, and act as data processors for the MHCYP 2020 survey for NHS Digital. All participants in MHCYP 2020 were asked for consent to be contacted about further research and surveys.

It is necessary for the University teams to have contact details in order to directly contact participants to complete recruitment and take consent for the interviews. Good research practice suggests that those carrying out the research should take consent so that it is fully informed. It also replicates the method previously used in the follow-ups of the 1999 survey, which were acceptable across over 800 interviews. Participants in MHCYP 2020 have already given consent to being contacted about further related research; hence, requiring that they opt-in consent to contact again on this occasion (within 1 year of the survey) represents an additional and unnecessary burden to them, which may result in a low response rate. The latter would jeopardise the main strength of the sample (i.e. its’ representative nature). The study team have full ethical approval from the University of Cambridge Psychology Research Ethics Committee for this procedure.

Expected output

The outputs from the research interviews are likely to include the following:

• Reports focussed on education and on access to services during Covid-19, aimed at stakeholders including the Department for Health and Social Care, the Department for Education, NHS England, Public Health England and Office of the Children’s Commissioner, Royal College of Psychiatrists and Royal College of Paediatrics and Child Health (target date, autumn 2021)

• Briefings for Schools and Mental Health services and practitioners, containing key messages for service planning and learning to improve practice

• Published report for the funder UK Research and Innovation (UKRI)/ Medical Research Council (MRC) (target date, spring 2022)

• Presentations to stakeholders as named above

• Conference presentations to education, child health, and mental health conferences

• Blogs and newsletter articles for practitioners and service planners, e.g. through the Association for Child and Adolescent Mental Health (ACAMH)

• A lay summary of the major study findings on the public-facing website: https://dev.psychiatry.cam.ac.uk/reshape/

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, the earliest of which is July 2021.

July 2021 — already listed in the earliest edition this site holds, so it may be older.
1 version: DARS-NIC-402080-N3V5Z-v0.5
October 2021
1 version added: DARS-NIC-402080-N3V5Z-v1.3
October 2022
1 version added: DARS-NIC-402080-N3V5Z-v2.3
December 2022
Register-wide edit DARS-NIC-402080-N3V5Z-v0.5 — Datasets: legal basis: “~~s261(1) and~~” taken out. Made to 639 agreements in this edition, so it is reported once, on the changes page, and not counted as an amendment of this agreement.
January 2023
Amended DARS-NIC-402080-N3V5Z-v0.5
- Datasets: + Mental Health of Children and Young People (MHCYP) Survey · ~~− Mental Health of Children and Young People (MHCYP)~~
Amended DARS-NIC-402080-N3V5Z-v1.3
- Datasets: + Mental Health of Children and Young People (MHCYP) Survey · ~~− Mental Health of Children and Young People (MHCYP)~~
Amended DARS-NIC-402080-N3V5Z-v2.3
- Datasets: + Mental Health of Children and Young People (MHCYP) Survey · ~~− Mental Health of Children and Young People (MHCYP)~~

"Amended in place" means NHS England changed the record without issuing a new version number. The register publishes no changelog for those edits; this site infers them by comparing editions. An edit is attributed to the edition it first appears in, not to the date it was made.

Cite this page

NHS England (2026) Data Uses Register, September 2026 edition, agreement DARS-NIC-402080-N3V5Z, “Tracking the impact of Covid-19 on the mental health of children, young people and families; follow up of a national longitudinal probability sample: follow-on interviews”. Read via NHS Data Access Explorer (unofficial), https://healthdatauses.uk/agreements/dars-nic-402080-n3v5z/ (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-402080-N3V5Z to see the original rows.