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Information Sheet for Parents / Guardians

Ethics Approval Reference: R62366/RE014

In partnership with researchers at the University of Oxford, your child’s school has agreed to take part in the OxWell study investigating student health and wellbeing by asking students to log in to an online survey. We would like you to understand why the study is being done and what it will involve.

What are we trying to find out?

Childhood and adolescence is a critical period for mental health and brain development. By asking them directly about how they experience school life and health-related issues, we hope to better understand what is happening to the mental health of young people, and to inform schools and local services of how to provide students with the best mental health support. More information about this study and the larger project can be obtained on the research team’s webpage (https://oxwell.org/) or by contacting the research team at: oxwell@psych.ox.ac.uk.

Why has my child been invited to take part?

We are inviting your child to take part because they are at a school participating in the OxWell study and are aged 8 years or older, currently in school year 5-13. We are inviting up to 100,000 students to take part.

Does my child have to take part?

No. If you do not want your child to take part in the research, please notify your child’s school as soon as possible and before the proposed survey date (which is decided by each school).

What will happen if my child takes part?

During a designated school class lesson of around 30 minutes, students will be invited to log in to the OxWell Student Survey, to answer around 200 questions on lifestyle and health-related issues. Some of the questions address sensitive areas (e.g., safety, bullying, mental wellbeing), and there are different versions of the survey to ensure that the content is age matched. Pupils in years 7-13 are also asked some questions related to risk factors like self-harm, drugs, abuse, depression and anxiety. At the end of the survey, appropriate advice and guidance is provided with links (e.g., www.childline.org.uk). We do not wish to identify students and therefore do not ask for names, addresses, date of birth or use unique logins. The survey data is collected as part of a service provided by Foster and Brown Research Ltd (www.fabresearch.com).

What are the advantages / disadvantages of taking part?

One potential risk of this study is that your child will be asked questions about a topic that they know nothing or very little about, such as about substance misuse (years 7-13 only). To mitigate the risks, different versions of the survey have been designed to ensure that the questions are age-appropriate, and most of these questions are seen only by students who indicate that they understand the topic and have experience in it. Schools and students are provided with links to websites offering information and guidance.

There are no direct benefits of taking part, but one of the aims of the survey is to advise schools on which topics students might require additional information on to be fully aware of the dangers of specific situations and behaviours. In the event that the survey highlights any safeguarding concerns then the relevant school safeguarding leads are informed of the number of concerning responses in the whole school, but this only takes place several weeks after the survey has been collected (as the data needs to be prepared for analysis).

What happens to the data provided?

The information your child provides as part of the study is research data. Any research data from which your child can be identified is known as personal data. In this study we do not wish to identify students and have taken measures to minimise this, so we do not collect names, addresses, dates of birth, IP addresses, or use individual logins to the survey. We also do not collect data relating to parents’ professions. A school login is provided to students, and opt-out records will be held by the school. We do ask some sensitive questions that relate to mental health, but make it clear that any questions can be left blank. Personal or sensitive data will be stored confidentially in password protected files on secure servers at the University of Oxford, and in secure databases by Foster and Brown Research Ltd. We would like your permission to use your child’s data in future studies, and to share data with other researchers (e.g., in online databases). All personal information that could identify your child will be removed or changed before information is shared with other researchers or results are made public. An up-to-date list of researchers with access to the data can be found here. Responsible members of the University of Oxford may be given access to data for monitoring and/or audit of the study. All research data will be stored by the University of Oxford for 20 years (the final ten years of which will be archived) for ongoing research studies, in accordance with the law. Foster and Brown Research Ltd will keep the data for at least 10 years. Summaries of our findings will be given to schools, local authorities, Clinical Commissioning Groups, Child and Adolescent Mental Health Services and Public Health teams who can use the results to guide the services they provide. They are also given access to summaries of the data via Foster and Brown’s online platform (Lodeseeker), which enables comparisons to the rest of the data collected but does not enable access to individual survey responses.

Who is conducting this research?

The research project is organized by The OxWell Study Team at the University of Oxford for which Professor Mina Fazel is the Principal Investigator. The research is funded by the by the NIHR Applied Research Collaboration (Oxford and Thames Valley), and the Westminster Foundation. This study has received ethics clearance through the University of Oxford’s Central University Research Ethics Committee [CUREC reference R62366/RE0014].

What if there is a problem?

If you have a concern about any aspect of this project, please contact Shona O’Leary, the OxWell administrator on oxwell@psych.ox.ac.uk / 01865 618170. We endeavour to respond within 10 working days. If you remain unhappy or wish to make a formal complaint, please contact the Chair of the Research Ethics Committee at the University of Oxford who will seek to resolve the matter in a reasonably expeditious manner.

Chair, Medical Sciences Inter-Divisional Research Ethics Committee; Email: ethics@medsci.ox.ac.uk; Address: Research Services, University of Oxford, Wellington Square, Oxford OX1 2JD.

Data Protection

The University of Oxford is the data controller with respect to your child’s personal data, and as such will determine how your child’s personal data is used in the study. The University will process your child’s personal data as needed for the performance of our public interest tasks, specifically our research and education functions. In circumstances where we identify a safeguarding risk in our research results, we will process your child’s personal data where it is necessary to protect their vital interests in relation to their health and safety and we process their health data where it is considered to meet a substantial public interest in safeguarding children at risk.

Further information about your child’s rights with respect to their personal data is available from www.admin.ox.ac.uk/councilsec/compliance/gdpr/individualrights.

If your child would like to exercise any of the above rights, please contact the University’s Information Compliance Team at data.protection@admin.ox.ac.uk. However, depending on the circumstances, we may have grounds for not complying with a request to exercise their rights, for example, where we consider that deleting the information would seriously harm the research or where we need to process your child’s data for the performance of a task in the public interest. Additionally, as we are not collecting any information that will directly identify your child (such as name, address, or date or birth) it may be difficult for us to identify your child’s individual survey response.

If for any reason you or your child are not happy with the way that we have handled their information, please contact our data protection officer (data.protection@admin.ox.ac.uk). If you or your child are still not happy, you have the right to make a complaint to the Information Commissioner’s Office.

What should I do next?

Please contact your child’s school if you would not like your child to take part in this study, or use the school’s usual electronic methods for parental opt-out. If you would like to discuss the research with someone beforehand (or if you have questions afterwards), please contact:

Dr Priyanka Panchal (Project Manager)
or Professor Mina Fazel (Principal Investigator)

Department of Psychiatry
Warneford Hospital
Oxford
Tel: 01865 613133
Email: oxwell@psych.ox.ac.uk