• Strong knowledge of UK GDPR, data protection legislation, and information governance best practice, ideally gained within a healthcare, education or charity setting.
• Experience advising on data protection compliance, information governance, cyber security, or organisational risk at a senior or strategic level.
• Understanding of the handling and protection of sensitive personal data
• Ability to provide clear, proportionate, and strategic guidance to trustees and senior leaders on data protection and information security matters.
• Experience contributing to governance, audit, risk, or compliance discussions within a board, advisory, or senior leadership environment.
• Strong analytical skills, with the ability to assess risk and translate regulatory requirements into practical organisational policies and actions.
• Commitment to Dragonfly Cancer Trust
• Alignment with the vision and purpose of the charity.
• Availability of approximately 3–4 hours per month and attendance at four Board meetings per year.

Remote

What will you be doing?

We’re looking for a trustee to take strategic ownership of data protection and information governance across Dragonfly Cancer Trust.

Our board is made up of committed trustees with backgrounds in fundraising, finance, and charity governance. As a small but growing charity, we are expanding our services, increasing online fundraising and communications, and working more closely with families, hospitals, schools, and corporate partners. This growth means we are handling more personal and sensitive data than ever before – from referral information about young patients to donor details, event registrations and digital engagement data – and we want to ensure our practices are consistently robust, lawful and compassionate.

Our key challenges are keeping pace with changing data protection requirements and best practice; embedding clear, practical policies that busy staff and volunteers can easily follow; and making sure our use of data supports excellent service delivery and fundraising without ever compromising trust. The board recognises that getting this right is critical to our reputation, our relationships with families and supporters, and our ability to demonstrate impact.

We now want a dedicated Data Protection Trustee to lead this agenda at board level. This trustee will act as our board champion for privacy and information governance reviewing and challenging our approach to data protection, supporting the CEO and staff team to implement effective policies and procedures, and ensuring data risks are properly identified and managed within our risk register. They will chair a small data and digital working group (a subcommittee of the board) that brings together staff and trustees to oversee key documents such as data protection policies, privacy notices, consent forms and retention schedules, and to monitor compliance and incident reporting.

This role is exciting because it goes right to the heart of what makes Dragonfly Cancer Trust trusted by families and professionals the way we safeguard the deeply personal information shared with us at some of the most vulnerable moments in young people’s lives. By taking the lead on data protection, our new trustee will not only protect the charity, but also help us harness good data to improve our support, evidence our impact and grow sustainable income. They will play a vital part in ensuring the charity can confidently scale its work, innovate in how we reach families and supporters, and remain a safe, reliable organisation for everyone who shares their stories with us.