Introduction In the National Health Service in England, we aim to provide you with the highest quality of healthcare. To do this, we must keep records about you, your health and the care we have provided to you or plan to provide to you. NHS care records may be electronic, on paper or a mixture of both, and organisations use a combination of working practices and technology to keep to this guarantee. This guarantee is our commitment that we will use records about you in ways that respect your rights and promote your health and wellbeing. The people who care for you use your records to: e provide a good basis for all health decisions made by you and healthcare professionals; e allow you to work with those providing care; e make sure your care is safe and effective; and e work effectively with others providing you with care. Others may also need to use records about you to: e check the quality of care (such as a clinical audit); e protect the health of the general public; e keep track of NHS spending; e manage the health service; e help investigate any concerns or complaints you or your family have about your healthcare; e teach healthcare professionals; and e help with research. S| cr You have the right: e to confidentiality under the Data Protection Act 1998, the Human Rights Act 1998 and the common law duty of confidence (the Disability Discrimination Act 2005 and the Race Relations Act 1976 and Amendment 2000 may also apply); e to ask for a copy of all records about you held in paper or electronic form (you may have to pay a fee); and e to choose someone to make decisions about your healthcare if you become unable to do so (this is called ‘a lasting power of attorney’). We have a duty to: @ maintain full and accurate records of the care we provide to you; e keep records about you confidential, secure and accurate; and e provide information in a format that is accessible to you (for example, in large type if you are partially sighted). It is good practice for people in the NHS who provide your care to: e discuss and agree with you what they are going to record about you; ° give you a copy of letters they are writing about you; and e show you what they have recorded about you, if you ask. The NHS Care Record Guarantee 2 The NHS Care Records Service Some of your health records are already held on computer, but many are still kept on paper. While the paper records we keep are protected by strict confidentiality and security procedures, these records are not always available to the care team looking after you. Handwritten entries in the record may be difficult to read and important information may be missing. The National Programme for IT is introducing modern secure computer systems into the NHS over the next few years. Some of these will hold electronic health records about you, making them available to the right people where and when they are needed for your healthcare, while maintaining your confidentiality and keeping your information secure. They are often referred to as the NHS Care Records Service. This new system will: e allow you to control whether the information recorded about you by an organisation providing you with NHS care can be seen by other organisations that are also providing you with care; e show only those parts of your record needed for your care; e allow only authorised people (who will need a ‘smartcard’ as well as a password) to access your record; e allow only those involved in your care to have access to records about you from which you can be identified, unless you give your permission or the law allows; e allow us to use information about your healthcare, in a way that doesn’t make your identity known, to improve the services we offer or to support research; The NHS Care Record Guarantee 3 e keep a note of everyone who accesses the records about you; and e be operated in line with internationally approved information security standards. The Summary Care Record Your Summary Care Record is part of the NHS Care Records Service. It contains information from your care record (current prescriptions, allergies, reactions to treatment) and any other information that you have agreed should be included. This means that wherever in the country you need care those providing it can have access to the most up-to-date information. We will ask your permission if we need to look at information in your Summary Care Record. When this is not possible, for example in an emergency when you are unconscious, we will teli you later. You will be informed when Summary Care Records are introduced into your area. Before we create the Summary Care Record, you can decide not to have a Summary Care Record at all. After we have created your Summary Care Record, you can decide: e not to share the information in it; e to share the information in it with others providing you with care; or e to add information from your other health records that you would like included. If you have a Summary Care Record, it is available to you at all times, free of charge, over a secure internet connection through the service called ‘HealthSpace’ (www.healthspace.nhs.uk). The NHS Care Record Guarantee A Our 12 commitments to you: 1 When we receive a request from you in writing, we must normally give you access to everything we have recorded about you. We may not give you confidential information about other people, or information that a healthcare professional considers likely to cause serious harm to the physical or mental health of you or someone else. This applies to paper and electronic records. However, if you ask us to, we will let other people see health records about you. Wherever possible, we will make your health records available to you free of charge or at a minimum charge, as allowed by law. We will provide other ways for you to apply to see your records if you cannot do so in writing. We will provide information in a format that is accessible to you (for example, in large type if you are partially sighted). When we provide healthcare, we will share your record with the people providing care or checking its quality (unless you have asked that we limit how we share your record). Everyone looking at your record, whether on paper or computer, must keep the information confidential. We will aim to share only as much information as people need to know to play their part in your healthcare. We will not share health information that identifies you (particularly with other government agencies) for any reason other than providing your care, unless: you ask us to do so; we ask and you give us specific permission; we have to do this by law; The NHS Care Record Guarantee 5 e we have special permission for health or research purposes; or e we have special permission because the public good is thought to be of greater importance than your confidentiality. If we share information without your permission, we will make sure that we keep to the Data Protection Act 1998, the NHS confidentiality code of practice and other national guidelines on best practice. There is more information about existing guidelines at: www.dh.gov.uk/en/Managingyourorganisation/Informationpolicy/ Patientconfidentialityandcaldicottguardians/index.htm 4 Under current law, no-one else can make decisions on your behalf, about sharing health information that identifies you. At the moment, the only exceptions to this are parents or legal guardians, or people with powers under mental health or other law. You can appoint someone to have a lasting power of attorney to make decisions for you if you lose the ability to make decisions for yourself. You can decide what rights that person has in making decisions about your care record. If you do not appoint anyone, a senior healthcare professional involved in your care may consider it to be in your best interests to share information. This judgment should take account of the views of your relatives and carers, and any views you have already recorded. For medical research or other purposes (see the box on page 7), the Ethics and Confidentiality Committee of the National information Governance Board for Health and Social Care can give special permission to share any health information that could identify you. The NHS Care Record Guarantee 6 |W hen we might use or share information that names you without asking you |O Sometimes we have a legal duty to give information | about people. Examples include: - births of children; - reporting some infectious diseases; - reporting gunshot wounds to the police; or - because a court orders us to do so. | © Sometimes special permission will be given to use your information without your consent. This may be for medical | research, keeping registers of cancer patients or checking quality of care. This permission is given by the Ethics and Confidentiality Committee of the National Information Governance Board for Health and Social Care. | O Special permission may also be given when the public good is thought to be of greater importance than your confidentiality. This is very rare, but some situations where — this might happen include: - when a serious crime has been committed; - when there are serious risks to the public or NHS staff; or | - to protect children. Other than in the most exceptional circumstances, this permission is given by the senior clinician in charge of protecting your privacy in each health or care organisation. (Often this person will be called the Caldicott Guardian.) The NHS Care Record Guarantee 7 5 Sometimes your healthcare will be provided by members of a care team, which might include people from other organisations such as social services or education. We will tell you if this is the case. When it could be best for your care for your health information to be shared with organisations outside the NHS, we will agree this with you beforehand. If you don't agree, we will discuss with you the possible effect this may have on your care and alternatives available to you. 6 Usually you can choose to limit how we share the information in your care records which identifies you. In helping you decide, we will discuss with you how this may affect our ability to provide you with care or treatment, and any alternatives available to you. 7 Wewill deal fairly and efficiently with your questions, concerns and complaints about how we use information about you. All trusts have a Patient Advice and Liaison Service (PALS) which can answer questions, point people towards sources of advice and support, and advise on how to make a complaint. We will have a clear complaints procedure. We will use what we learn from your concerns and complaints to improve services. The NHS Care Record Guarantee 8 8 We will take appropriate steps to make sure information about you Is accurate. You will be given opportunities to check records about you and point out any mistakes. We will normally correct factual mistakes. If you are not happy with an opinion or comment that has been recorded, we will add your comments to the record. If you feel you are suffering distress or harm as a result of information currently held in your record, you can apply to have the information amended or deleted. 9 We will make sure, through contract terms and staff training, that everyone who works in or on behalf of the NHS understands their duty of confidentiality, what it means in practice and how it applies to all parts of their work. Organisations under contract to the NHS must follow the same policies and use the same controls as the NHS does. We will enforce this duty at all times. 10 We will take appropriate steps to make sure we hold records about you — both paper and electronic — securely and only make them available to people who have a right to see them. 11 We will keep a record of everyone who accesses the electronic information the NHS Care Records Service holds about your diagnosis, care and treatment. You will be able to ask for a list of everyone who has accessed records that identify you, and when they did so. There may be times when someone will need to look at information about you without having been given permission to do so beforehand. This may be justifiable, for example, if you need emergency care. We will tell you if the action cannot be justified. The NHS Care Record Guarantee 9