Shared Care Records in the NHS: What Aspergillosis Patients Need to Know

The NHS is changing how patient records are managed. By 2026, every area of England will have a Shared Care Record. This is not one big “national record,” but a way of securely linking together the different records held by your GP, hospital, and other services.

For patients with aspergillosis, this could make a real difference to care, safety, and research.

🗂 What Is a Shared Care Record?

• Not one single file: Your GP, hospital, and community services keep their own systems.

• Linked together: Clinicians can securely view a joined-up picture of your health.

• Safer and faster care: Your allergies, test results, and medications can be seen wherever you are treated.

• You tell your story once: No more repeating details every time you see a new doctor.

🛡 How Safe Is My Data?

• Strict access control: Only staff directly involved in your care can open your record.

• Audit trail: Every time it’s viewed, the system records who, when, and why.

• Encryption & firewalls: Records are locked against outside access.

• No mass downloads: Systems only allow one patient’s record at a time.

In many ways, this is safer than old paper notes, which could be lost, copied, or seen by accident.

👩‍⚕️ Confidentiality Rules Stay the Same

• NHS staff are bound by confidentiality laws and the Caldicott Principles.

• Looking at a record without a valid care reason is a disciplinary offence.

• Your record is not shared with insurers, employers, or relatives without your consent.

📊 Research and Aspergillosis

Shared Care Records could also help improve research into aspergillosis, which is often under-recognised:

• Better case finding: Linking GP, hospital, and lab data makes it easier to identify true cases.

• Tracking outcomes: Researchers can follow IgE/IgG results, CT changes, and treatment responses over time.

• Environmental links: Data could be combined with housing, air quality, and weather information.

• Support for trials: Easier to find eligible patients for new antifungal or biologic studies.

All research use is usually de-identified (your name and personal details removed). You can choose to opt out via the National Data Opt-Out if you don’t want your data used in this way.

🏦 Will Insurance Companies See My Record?

No. Insurance companies and employers cannot access your NHS record.
If you apply for insurance, your GP may be asked for a report — but this is only done with your consent.

🌐 What If I Don’t Use the Internet?

You don’t need to be online to benefit. Shared Care Records are mainly for clinicians, not for patients logging in.
If you want to see your record, you can still ask for a paper copy from your GP or hospital.

📍 Who Runs Shared Care Records?

They are organised locally by Integrated Care Systems (ICSs).

• England is divided into 42 ICSs, each bringing together NHS services, local councils, and community care.

• Examples include Greater Manchester ICS, Cheshire & Merseyside ICS, and North East London ICS.

• Scotland, Wales, and Northern Ireland use different systems.

✅ Key Reassurances for Patients with Aspergillosis

• Your data remains confidential and secure.

• Shared Care Records mean joined-up, safer care across GP, hospital, and community services.

• Insurers and employers cannot access your NHS record.

• You stay in control — you can opt out of data use for research if you wish.

• The new system could help advance aspergillosis research, leading to better diagnosis and treatments.