Looking After Your Records

Information Governance Team

What information does Alder Hey collect about me during my care?

Information for Patients

Looking After Your Records Patient Leaflet PIAG 179 (228kB pdf)

About this leaflet

This leaflet is about what happens to the information that Alder Hey collect about you whenever you come to see us. It also tells you how we make sure it is kept safe.

What do we collect?

We collect information about you such as:

• Your Name
• Why you are coming to see us
• Your birthday and year you were born
• Your address
• The name of the person who will generally bring you to your appointments
• Your Family Doctor (General Practitioner or GP)
• The reason that you are coming to see us
• Any information that your family doctor, you or your family gives us
• What we do to care for you

Why do we collect it?

Alder Hey’s main purpose is to deliver healthcare to children. We collect the data we need to care for you in the best way.

We ask for your address so that we know where we can contact you.

We ask for your date of birth, as your age may be important to your care.

Each time you come to see us, or stay with us we will write down things that you tell us, things that we tell you and any medicines or exercises we give you. That way, we can look back at what we have done for you to make sure we are treating you in the best way.

What do we do with it?

We keep the information we collect electronically and on paper. All of this information together is called your Health Record or we might call it your Casenote.

When you first see us your Health Record will be given a number. Everyone’s Health Record number will be different.

Anyone involved in caring for you at Alder Hey can see what has been collected. This way we can all make the right decisions about your care with all of the information you have given us.

Who we share it with

We will share the information we record about you with your Family Doctor. That way they are kept up to date on what we are doing for you.

Your parents / guardians should get a copy of any letters we send to your doctor about your care. We might share it with other hospitals involved in your care. We might share it with your school if we think it is important for them to know. If you have a social worker we will share it with them too.

If you tell us something that makes us worried about your safety or the safety of some-one else you know, we might have to share this with other people outside of the hospital – even if you don’t want us to. This is part of our job to keep you and others safe.

Keeping your records safe

Everyone working in our hospital understands that they need to keep your information safe. This is called keeping your information confidential or protecting your privacy.

They have training every year to remind them of this. We tell them that they are only allowed to look at your information if they are involved in your care or to help us run our hospital. They understand that they must keep any information safe, especially the information that identifies you. This might be your name or address and anything you come to see us about.

We are not allowed to give any of this type of information to anyone who shouldn’t see it. This includes talking to them about it.

We teach future Doctors and Nurses

Students who are at University or College and want to work in a hospital sometimes spend time with us. This is so that we can teach them how to look after patients and their families. They are told how to keep information we collect safe too.

Checking we are doing our best

All hospitals are checked by organisations to make sure they are treating and caring for patients and families in the best way they can. The people who inspect us may ask to see a small number of Health Records. They check that notes are written clearly and are kept safe to ensure that we recording and storing your information safely.

How long do we keep the information for?

We must keep information we hold about you until your 26th birthday, and sometimes longer if required by law. Currently we must keep and not destroy any health records in line with a national requirement.

Am I able to see the information you collect about me?

Yes! If you are in our Hospital you may be able to see the records while you are with us. You or your family will need to ask your doctor or nurse first though, as there may be things that we would need to explain to you such as abbreviations or medical words.

Can I have a copy of my records?

Yes! Your parent / guardian will need to write to us (they can email us) to tell us what they want to see – it may just be part of your record, your x ray or a report. We will check they are who they say they are to make sure we are not sharing your information with anyone who shouldn’t see it. You may be able to request your health records yourself.

If I think some of my information is wrong can I do anything about it?

Yes! Your parent or guardian needs to contact the Access to Health Records team at [email protected], telling them what it is that you think is wrong.

If I’m unhappy with the way you’ve used some of my information can I do anything?

Yes! Let us know by emailing us at [email protected] or you can contact the Information Commissioners office.

We hope this leaflet tells you what you need to know about the information we collect about you. If you want to know anything else please email us at [email protected]

This leaflet only gives general information. You must always discuss the individual treatment of your child with the appropriate member of staff. Do not rely on this leaflet alone for information about your child’s treatment.

This information can be made available in other languages and formats if requested.

PIAG: 179