Your medical records are scattered across different hospitals, clinics, and systems that don't talk to each other. When you need urgent care, critical information sits locked away in another provider's database. This creates delays, increases risks, and frustrates both patients and providers.
Data portability could change this. It gives patients control over their health records and lets them move information securely between providers. But getting this right means balancing two priorities: making data accessible when needed, whilst keeping it protected from misuse.
Recent developments in the UK and EU show how patient data systems can achieve both portability and privacy.
The UK's health data system is fragmented and complex, with no central record of patient data. Hospitals and GP surgeries independently keep data about patients treated there, and data sharing practices vary across the country with no consistency about what data is held where and why.
This fragmentation has real consequences. Recent research by Healthwatch found that over one in eight people who noticed inaccuracies in their records said they had not received an important test or treatment that they would have if the information had been correct. A similar number said they had been refused treatment because of inaccurate or missing information.
Healthcare professionals rely on complete information to make safe decisions. As one recent investigation found, GP systems don't present information in a way that enables doctors to quickly see whether a patient is returning with unresolved symptoms, potentially leading to delayed diagnosis of serious conditions.
The problem isn't unique to the UK. Across the EU, the level of digitalisation varies from one member state to another, making it difficult to share data across borders. Patients moving between countries - or even between providers within the same country - often find themselves repeating tests, explaining their medical history from memory, or facing delays while records are manually transferred.
Data portability is about patient control. It means you can access your medical records, store them securely, and share them when necessary. Whether that's:
This shifts the traditional model. Instead of institutions owning and managing health data, patients become the primary holders of their own records. But this only works if privacy and security aren't compromised in the process.
Both the UK and EU have made significant moves toward patient data portability this year.
In October 2024, the UK government introduced new legislation allowing patients' data to be easily transferable across the NHS. The measure is expected to free up 140,000 hours in NHS staff time every year, providing quicker care for patients.
The government plans to create a "single patient record" summarising patient health information, test results and letters in one place electronically through the NHS App from 2028. The Data (Use and Access) Act 2025, which received royal assent in June, ensures that information standards can apply to IT providers and services used in health and adult social care, addressing challenges around fragmented NHS data.
The European Health Data Space (EHDS) regulation entered into force in March 2025, establishing clear rules for the use of health data across EU member states. Under the new rules, citizens will have immediate and easy access to their digital health data wherever they are in the EU.
The EHDS gives people the right to access their health data in electronic form immediately, free of charge and in an easily readable format. They can share their data with other health professionals when going to another hospital, without hindrance from previous healthcare providers.
Patients will also have more control over their electronic health data, including the possibility to add personal health information, restrict access to specific parts of their record, view who accessed their data, and ask for corrections if errors are found.
Under UK GDPR, patients have the right to access and receive a copy of their personal data. They also have rights to rectification, erasure, and data portability. However, implementing these rights effectively requires proper technical infrastructure.
The EU's General Data Protection Regulation recognises health data as a special category requiring additional safeguards. Innovative principles like privacy by design and prohibition of discriminatory profiling remain relevant and applicable to health data.
The EHDS includes strong privacy protections. For example, patients will have the right to restrict health professionals' access to all or parts of their personal electronic health data. Processing health data for secondary use will only be possible for specific outlined purposes, and it will be forbidden to use the data for decisions detrimental to individuals or for marketing purposes.
Real patient control requires more than legal rights - it needs practical tools that people can actually use in healthcare.
Clear consent management means patients can see exactly who has access to their data, understand why access was granted and for how long, and revoke permissions at any time. This requires dedicated tools built into patient portals and mobile apps that make sharing decisions straightforward rather than buried in complex legal language.
Data accuracy and correction becomes crucial when records follow patients across providers. With over a quarter of people who check their records finding inaccuracies, including wrong personal details, medications, and diagnoses, robust correction mechanisms are essential.
Patient education helps people understand and use their new rights effectively. When patients understand how their data is handled and what control they have, they're more likely to engage actively in their own care and make informed decisions about sharing.
Data portability increases the attack surface for potential breaches, making strong security essential rather than optional.
Modern encryption should protect all patient data whether stored, transmitted, or processed. This isn't just about meeting compliance requirements - it's about maintaining the trust that makes patients willing to share their information in the first place.
Digital identity verification ensures that the right people can access data whilst keeping everyone else out. This eliminates reliance on passwords or paper forms, whilst keeping sensitive information protected during verification.
Regular security audits and monitoring help identify vulnerabilities before they become breaches. With healthcare experiencing continued high numbers of data breaches - 725 large breaches reported in 2024 alone - proactive security measures are essential.
Patient data portability addresses a fundamental question of rights. People should control their own health records and be able to move, store, and share that information safely.
The infrastructure and legal framework now exist to make this happen. The UK is moving toward single patient records accessible through the NHS App. The EU has established cross-border health data sharing through the EHDS. Both frameworks prioritise patient control whilst maintaining strong privacy protections.
Success will depend on implementing these systems properly - with privacy and security as foundational requirements, not afterthoughts. The goal is giving patients meaningful control over their health information whilst enabling the data sharing that improves care outcomes.
When patients can access their complete medical history instantly, when doctors can see relevant information from other providers immediately, and when all of this happens with proper consent and security protections, we'll have achieved true data portability. The technology and legal frameworks are ready. What's needed now is the commitment to implement them correctly.
Interested in learning more about secure digital identity solutions for healthcare and other sectors? Explore our resources or contact our team to discuss how modern identity verification can support your organisation's goals.
