Review of Together for Mental Health: Exploring young people’s views on mental health support, language and awareness in Wales (online survey and follow up interviews): privacy notice

The Welsh Government is undertaking research to explore the views of children, young people and their parents/carers on the Together for Mental Health strategy.  This aim of this research is to explore the views of young people with mental health difficulties for which they needed support (as well as their parent’s views) on changes in mental health support over the last few years.  As part of this research Welsh Government will be gathering information through interviews and an anonymous online survey.

The Welsh Government is the data controller for the research. The information collected during the project will be included in a report published on the Welsh Government website and possibly in other publications.

Your participation in this research is completely voluntary. However, your views and experiences are important in order to help inform Welsh Government policies.

The contact for this research at Welsh Government is:
Dr Christopher Eaton
Email: christopher.eaton@gov.wales

Personal data is defined under the UK General Data Protection Regulation (UK GDPR) as ‘any information relating to an identifiable person who can be directly or indirectly identified by reference to an identifier’.

The Welsh Government wish to find volunteers for the review of Together for Mental Health in different regions of Wales. Welsh Government do not hold relevant contact details. You will have seen a flyer for the study because:

• the Welsh Government have asked mental health charities to distribute a flyer explaining the study and how to take part
• Welsh Government is distributing the flyer to youth groups or panels who work with Cardiff University and Welsh Government (e.g. Welsh Youth Parliament, youth panels who advise NHS Health Boards in Wales), through Welsh Government’s network of key contacts, who work with young people (e.g. the Children’s Commissioner for Wales)
• because you are on a mailing list from studies of youth mental health at Cardiff University and agreed to be contacted about future research opportunities and have received the flyer from the original study lead
• the study is also being advertised on social media

As explained in the flyer, if you wish to take part you can contact the research team at christopher.eaton@gov.wales to receive a link to the anonymous online survey. We also wish to interview a small number of children / young people and their parents (or guardian or carer as relevant). How you will receive the survey and the information we collect as well as details of how we will ask you to take part in an interview are explained below.

Your email address will only be accessible by the Welsh Government research team and will only be used as part of undertaking this research project.

Online survey

There is a separate survey for parents (or guardian or carer as relevant) and for children / young people. The surveys for children / young people are designed to be age specific.

When we receive your email and before sending the survey link, we also ask for your/your child’s age. This is so we can send you the correct survey link for your/your child’s age. If you are over 16 then we will not ask for the details of your parent to send a survey but we will ask you to pass on to them a link to the parent survey. If you are under 16 and you email the research team asking for a link to the online survey, we will ask you to ask your parent to email the research team at christopher.eaton@gov.wales to request the survey links. We will then send your survey link, along with their own survey, to your parent and they will pass your survey link onto you.

The survey does not ask for name and neither your email address nor your IP address are captured as part of completing the survey so the survey is anonymous.

Follow up interview

If a young person is aged 11 to 18, in order to participate in the interview stage, both parent (or guardian or carer as relevant) and child / young person need to agree to be interviewed and provide their contact details. If a young person is aged 19 to 25, they can take part in the interview without their parent/carer also taking part. There is a separate interview for parents and for children / young people. We will be interviewing participants on a first-come, first-served basis, so we may have reached our recruitment target by the time you email expressing your interest. If this happens, we will let you know and delete your/ your child’s name and contact details you provided to us.

Before the interview, we will ask all interview participants to sign a form agreeing to take part. If you are under the age of 16, we will also need your parent (or guardian or carer as relevant) to sign a form stating that they agree for you to take part.

We will also ask for some information about both children / young people and parents in an anonymous online questionnaire, so that we can understand the background of the people we are interviewing. We need to do this, even if it was collected in the original survey, as your original survey responses are completely anonymous. If you are a parent or aged 16 or over, we will ask you to complete a background questionnaire, if you are younger than 16, we will ask your parent to complete the background questionnaire on your behalf. The information will include things like ethnicity and whether you identify as LGBTQ+ but it will be completely anonymous and we will use it to understand the range of people we have interviewed so that we can use the information appropriately and not draw unwarranted conclusions.

You will not need to provide any further personal data as part of the interview except we will ask for the date of birth of the young person and the contact details for their general practitioner (GP). We will ask the young person themselves for these details if they are aged 19 to 25 and their parent for these details if they are aged 11 to 18. We collect these details in case during the interview a child / young person tell us something that means we’re worried about their safety and we feel we need to inform your GP of this. An example would be if you told us you were having thoughts of harming yourself or others.

We would like to record interviews for operational reasons. We will make this clear to you before the interview begins, and you will have the opportunity to tell us if you are not happy for the interview to be recorded. If interviews are recorded, personal data will be removed during the process of transcribing interviews. Recordings will be deleted as soon as this process is completed. If interviews are not recorded, personal data will not be included in written notes during or prepared following interviews.

If you raise a query or complaint and provide personal data requesting a response, the researcher will forward the request only to the relevant official and subsequently delete it from the research data.

The lawful basis for processing information in this data collection exercise is our public task; that is, exercising our official authority to undertake the core role and functions of the Welsh Government.

Participation is completely voluntary. Research studies such as this are important for the Welsh Government to collect information and actionable evidence about its ability to deliver government priorities. The information collected in this research, for example, might be used to inform the development of the next mental health strategy.

Personal information provided to Welsh Government is always stored on a secure server. The data can only be accessed by a limited number of researchers working on this project. Welsh Government will only use this data for research purposes. Welsh Government has cyber essentials certification.  

When conducting surveys, Welsh Government use a survey software programme called SmartSurvey. This is UK GDPR compliant and meets our expectations in terms of the security of any data collected via the software (all data is processed within the UK).

As part of an interview you will be asked to complete a form agreeing to take part and this will be done via a platform called Objective Connect. This is a secure file sharing application we use with people outside of Welsh Government. We will create a folder specifically for you, which only you and the research team will be able to access.

The most sensitive data we collect in an anonymous form (using SmartSurvey) so we do not know who the data relate to as we only require an overall view of the people we interview.

Welsh Government has procedures to deal with any suspected data security breaches. If a suspected breach occurs, Welsh Government will notify you and any applicable regulator where we are legally required to do so.

Welsh Government will use the information gathered to produce a report that will be published on the Welsh Government website. This report will not include any information that could be used to identify individual participants.

Welsh Government will hold personal data during the project period. Three months after the end of the study, the research team will anonymise all the personal data it has collected from, or about, you in connection with this research project – i.e. we will delete your/your child’s name, your contact details and your/your child’s date of birth. The exception to this is your consent form, this will be retained for five years and may be accessed only by members of the research team.

Under UK GDPR, you have the following rights in relation to the personal information you provide as part of this project, you have the right:

• to access a copy of your own data
• for us to rectify inaccuracies in that data
• to object to or restrict processing (in certain circumstances)
• for your data to be ‘erased’ (in certain circumstances)
• to lodge a complaint with the Information Commissioner’s Office (ICO) who is our independent regulator for data protection

You can contact the Information Commissioner’s Office at:

Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF
Telephone: 01625 545 745 or 0303 123 1113
Website: Information Commissioner’s Office

If you have any further questions about how the data provided as part of this study will be used by the Welsh Government or wish to exercise your rights using the UK General Data Protection Regulation, please contact:

Janine Hale
Email: janine.hale@gov.wales
Telephone: 0300 025 6539

The Welsh Government’s Data Protection Officer can be contacted at:

Welsh Government
Cathays Park
Cardiff
CF10 3NQ

Email: dataprotectionofficer@gov.wales