The Parent Carer Research Network aims to enable parents and carers to participate and engage with research focused on children & young people’s mental health and wellbeing via tailored communications, events, and opportunities. The Network is hosted by the University of Oxford, in partnership with the Charlie Waller Trust. The Network is part of the Oxford Health Biomedical Research Centre which works with a range of partners including the University of Birmingham. This privacy notice explains how we may collect, use, and store your personal data to carry out Network activities. We adhere to the policies and procedures of the University of Oxford

What data do we collect?

We may collect the following data:

• Personal identification information for anyone expressing interest in finding out
  more or receiving communications about the Network, applying for a Network
  role, or attending an event such as:
  • Title, Name, email address, phone number, address, role, organisation,
    age demographic of children
• Further personal information about you as part of an application for a Network
  role (e.g. Steering Group member) including:
  • Skills and experiences that make you suitable for the role, and
    confirmation that you have relevant lived experience
  • Details of challenges you may have/support you may need to take up a
    role
• Event-specific personal details such as:
  • Dietary and accessibility requirements
  • Further details about your role or occupation
  • Your consent for us to share your data e.g. with a catering team
  • Your consent to participate in media e.g. photography, video, quotations
  • Financial details to reimburse expenses you incur as part of a Network
    role
• Research involvement information including:
  • The research project activities and projects you get involved with
  • Your feedback on your experiences of being involved in research
  • Your ideas for future research priorities

Data collected for the purposes of the research activities you engage with will not be collected directly by the Network other than the research involvement information listed above. Any data shared as part of research activity is the responsibility of the team conducting the research, and we hold no liability for this.

How do we collect your data?

Your data may be collected by us in the following ways:

• Via our Network signup form or a personal conversation at an event
• Via a personal communication from you to the Network
• Via our Expressions of Interest form for finding out more or joining the Network
• Via signing up to attend one of our events
• Via an application for a Network role e.g. Steering Group member
• Via an expense claim form for undertaking a Network role
• Via our optional Network surveys.

Our lawful basis for collecting and processing your data will be you giving us your consent to do so. At any time, you have the right to ask us what data we have, how we use it and, if you wish, to have it permanently deleted from our databases.

How will we use your data?

We may use your data:

• To get in touch with you about joining the Network
• To provide you with updates about Network activities and share opportunities, events and resources
• To provide Network membership support including:
  • checking your continued consent to membership and contact
  • communicating with you about opportunities you wish to share with the wider Network
  • sharing amendments to Network policies
• To organise an event you have registered for, and contact you about this as needed. This may involve giving your data to a third party e.g. dietary requirements.
• To let you know the outcome of an application you have made for a Network role
• To communicate with you about a role you hold with the Network e.g. for Steering Group members this might include:
  • sharing documents or resources to review, or opportunities to get involved in further Network activities
  • coordinating practical arrangements for meetings and collecting payment details to reimburse you time and expenses
• To help support you in your involvement in research.

We may also use the data we collect to develop the Network and its activities:

• To help monitor and improve the inclusivity and diversity of membership of the Network.
• If you have consented, we may use your data (e.g. name, image, video, quotations, research you are involved in) on social media, our website, and our newsletter.
• To monitor engagement with research activities and identify and prioritise areas for development.
• We will use feedback from members about their experiences of using the Network to ensure it is beneficial for participants and researchers and plan future improvements.
• We will use anonymised membership data to report back to our funder against our project objectives and milestones.
• We may use anonymised membership data and research findings to publish literature about the Parent Carer Research Network.

How will we keep your data safe?

We will store your data in restricted access folders on the University of Oxford’s secure cloud storage system (Nexus 365 OneDriveforBusiness). Your data will only be accessible to our core Network administrative and communications staff. We will only share your data with a third party if you have consented e.g. to a venue when attending an event.

We will review all data we hold from you on an ongoing basis. We will keep your data for as long as required to carry out the activities relating to the data you gave us. For instance, if you let us know dietary requirements for an event, we will delete these after they are no longer needed. If you have signed up to receive general communications from the Network, you have the right, at any time, to ask us what data
we have, how we use it and, if you wish, to have it permanently deleted from our databases.

The Parent Carer Research Network team will be the day-to-day handlers of your data. If you have any questions about how your data is being collected, processed, or stored in the first instance please contact the team on parentcarerresearchnetwork@psych.ox.ac.uk.

The University of Oxford is the data controller with respect to the data we collect as part of Network activities. Further information about your rights, and contact details should our Network team not be able to help, is available from the University’s Information Compliance website: https://compliance.admin.ox.ac.uk/individual-rights.

Privacy Notice created 25 March 2024. Last amended 21 May. To be reviewed
annually