About this privacy notice
This privacy notice explains how Engage: The Children and Young People’s Cancer Lived Experience Platform (Engage), and its owners, CCLG: The Children and Young People’s Cancer Association (CCLG) and Solving Kids’ Cancer UK (SKC), collect, use, share, store and protect information from individuals who register to participate in Engage.
CCLG and SKC are committed to being transparent and responsible about how we handle any personal data we collect from you. All personal data we collect is managed according to the UK General Data Protection Regulation (UK GDPR) and the Data Protection Act 2018.
You can find out about how CCLG and SKC use personal information by reading our individual privacy notices. The Engage privacy notice should be read alongside those notices.
Our online community platform
The Engage programme utilises ‘Circle’, an online community platform provided by CircleCo, Inc., to host the Engage platform. CircleCo, Inc. may process personal data outside the UK. Where this happens, we will ensure appropriate safeguards are in place as required by data protection law. You should also read Circle’s privacy policy for information about how they handle personal data in connection with their platform.
Changes to this privacy notice
We reserve the right, at our discretion, to change, modify, add, or remove portions of this privacy notice at any time. If we make changes, we will update the date of the notice, and in some cases (for example, where a change materially affects how we use your information), we will provide you with additional notice (such as adding a statement to our website or sending you a notification).
Who is responsible for your personal data
For the purposes of running the Engage programme, data relating to participants is shared between CCLG and SKC. Both CCLG and SKC are joint data controllers, which means both organisations decide how and why participant data is used for Engage. Personal data is defined as data that can be used to identify a living person. We will only collect and use personal data where it is necessary and proportionate for running Engage, supporting your participation, managing the community, and meeting our legal and regulatory responsibilities.
What personal data we collect
Depending on how you use Engage and what you choose to share, personal data may include:
- Contact details;
- Demographic information;
- Lived experience narratives;
- Training and participation records;
- Feedback and evaluation data;
- Special category data (e.g. health information); and
- Any other personal data that you may voluntarily provide us, e.g. as part of a survey.
How we protect your personal data
Both CCLG and SKC will implement appropriate technical and organisational measures to protect shared data against unauthorised or unlawful processing and against accidental loss, destruction or damage.
Where we get personal data from
Most personal data comes directly from you. We may also receive it from another member, an event organiser, your organisation, a referral partner, our service providers, publicly available sources, or automatically through your use of the platform.
When participating in Engage, please do not post personal data about another person unless you have a lawful reason and the right to share it. Avoid posting information that is unnecessary, confidential or especially sensitive.
How and why we use personal data in relation to the Engage programme
The purposes for which we use personal data, and the lawful bases we rely on, are set out below. Where we process special category data, such as health information, we will only do so where we have a lawful basis under UK GDPR and an additional condition under Article 9 UK GDPR.
| Purpose | Lawful basis |
| To create and administer accounts, to provide programme and community features | Performance of a contract, or legitimate interests where no contract applies |
| Moderate community content, enforce rules, prevent misuse, and keep the service secure | Legitimate interests; legal obligation where applicable |
| Response to enquiries, provide support and resolve complaints | Performance of a contract or legitimate interests |
| Improve the programme and community through analytics, testing and feedback | Legitimate interests, or consent where required for cookies or similar technologies |
| Sending newsletters and information that is service related | Legitimate interests |
| Sending marketing messages, including for fundraising purposes | Consent |
| Meet safeguarding, financial, regulatory or legal requirements and establish or defend legal claims | Legal obligation or legitimate interests |
We will keep personal data for as long as needed to run Engage, manage participation, meet legal or regulatory requirements, resolve queries or complaints, and maintain appropriate records. We will not keep personal data for longer than necessary.
Using the online community: what other community members can see
Your username, profile photograph, biography and posts may be visible to signed in members.
You are responsible for choosing what to share and for reviewing your privacy settings.
Children and young people
The community is currently not intended for anyone under 18. If we become aware that someone under 18 has registered or provided personal data through Engage, we will take appropriate steps to review and manage that information.
Your data protection rights
Depending on the circumstances, you may have the right to be informed; access your personal data; correct inaccurate data; request deletion; restrict processing; object to processing; receive portable data; withdraw consent; and rights in relation to solely automated decision-making and profiling. These rights are not absolute.
To exercise a right, contact engage@cclg.org.uk. We may ask for information to confirm your identity. We normally respond within the period required by law and will explain if an exemption or extension applies.
Questions and complaints
Please contact us first at engage@cclg.org.uk if you have a question or complaint.
You also have the right to complain to the Information Commissioner’s Office, the UK data protection regulator, at www.ico.org.uk if you are unhappy with how we have handled your personal data or responded to your data protection concern. If you are outside the UK, you may also be able to contact your local supervisory authority.
Last updated: September 2026