Understanding data protection and General Data Protection Regulation (GDPR)

Many patient group leaders find the topic of data protection and General Data Protection Regulation (GDPR) daunting.

Leaders know that their group must be GDPR compliant, but often don’t know what that means or entails for their organisation.

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Our top tip guide is designed to help UK-based charities explore how data protection may affect their operations and how they can better manage GDPR.

This guide will help groups understand their data protection responsibilities so they can use their community’s data safely and securely.

With thanks to:

Costello Medical and Bristows LLP provided pro bono support in the creation of this top tip guide.

With thanks to the Funders of The Empowerment Programme 2025

Disclaimer

The information in this guide is for general guidance only and does not constitute legal advice.

GDPR practices and laws are always changing, so ensure that you stay up-to-date on the latest guidance.

Beacon is not a certified GDPR authority.

This guide was developed with input from legal experts to support rare disease patient groups in navigating the complexities of data protection.

We strongly recommend consulting a qualified GDPR professional for personalised legal advice tailored to your specific questions or concerns.

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Resource type

Top tip guide

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Skill level

Beginner

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Duration

Est. 90 minutes

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Last updated

July 2025



Resource type

Top tip guide



Skill level

Beginner



Duration

Est. 90 minutes



Last updated

July 2025

What will you learn in this top tip guide?

What GDPR is and how to ensure your patient group complies with it when handling personal data like names, contact information, and health records.

What constitutes valid consent, how to obtain it fairly and how individuals can withdraw consent.

Practical steps for managing data safely—such as anonymisation, using third-party platforms securely, preparing for data breaches, and appointing a Data Protection Officer (DPO).

Who is this top tip guide for?

This top tip guide is designed for UK-based patient group leaders who want to better understand their data protection responsibilities so they can use their community’s data safely and securely.