How we use your information. Information for patients and service users
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1 How we use your information Information for patients and service users
2 What we record about you Pennine Care NHS Foundation Trust provides mental health and community health services to people living in a number of boroughs within the Greater Manchester area. Your Doctor, nurse and the team of health and care professionals caring for you keep records about your treatment and care both on paper and electronically. These include: Personal details such as name, address, date of birth, ethnicity and religion, NHS number and next of kin Contact we have with you e.g. hospital admissions, outpatients/ clinic appointments and home visits Notes and reports by health and care professionals about your health, GP details etc Details and records about your treatment and care Results of x-rays, laboratory tests, and any other tests Relevant information about people that care for you and know you well Basic details about associated people e.g. children, partners, carers, relatives etc Information held on computer systems We are working towards creating a single, electronic, integrated mental health and community health care record. This means that important details about your health and well-being will be available to health and social care professionals involved in your direct care. The benefits to you: Access to your electronic health record is only possible if staff have a clinical relationship with you and if they are issued with authorised secure login details. Each time your information is accessed, an electronic record of this is made on the system Health care professionals involved in your direct care can see your current referrals and previous contacts with us, your medication, your care assessment plans and discharge information Time is saved in bringing together information to make vital decisions about your care and treatment Information that you give to any health care professional is recorded properly and shared safely so that you do not have to keep telling people the same thing again and again Information is kept safe, confidentially in a secure system and will only be shared with the people who treat you medically and care for you professionally Linking health information for joined up care will enable all the different health care professionals who may look after you to work together to give you better treatment and care, and improve service provision Making it easier to look at and share your health records will support you to take control of your own care and work with
3 health professionals to support no decision about you without you How is your information used? To provide you with care and treatment, both now and in the future, ensuring that appropriate information is available to all those who treat you medically and care for you professionally To ensure your care is safe and effective To support you in managing your own care and work with health and care professionals to support no decision about you without you To look after the health of the general public To manage and plan the NHS To help staff review the care they provide e.g. clinical audit To train and educate staff (you can choose whether or not to be involved personally) To carry out research approved by the local research and ethics committee. (If anything to do with the research would involve you personally, you will be contacted to see if you are willing to take part. You will not be identified in any published results without your agreement.) Has accurate, up to date information Has a good basis for any treatment or advisory services they provide to you Can enable you to work with them when they provide care, treatment or advice Ensures your treatment is safe and effective, and the advice provided by us is appropriate and relevant to you How we protect your information We keep paper and electronic records securely to prevent unauthorised access in line with the Data Protection Act The sensitivity of patient information is well understood within the NHS (all staff are given training on their duty of confidentiality to you). Managing the Data We need to be able to move electronic information between the separate systems that provide information to support your care and the care processes. Data is also extracted and processed to support the operation of the services and monitoring the delivery and management of the services. Investigate any complaints or legal claims. Your records are used to guide and manage the care you receive. It is therefore important that you give accurate information to your care professional and inform them of any relevant changes. This ensures that any professional involved in your care:
4 When information may be shared and who with We will only ever share your information if it is in the best interests for your care. We will not disclose any information that identifies you to anyone outside your direct care team 1 without your express permission, unless there are exceptional circumstances such as when there is serious risk of harm to yourself or others or where the law requires it. Who we may share your information with: Direct care: Other hospitals GPs Ambulance Service Social care You will be asked for your explicit consent for identifiable information to be shared with non-care organisations which will be subject to strict agreement about how it will be used, for example: Housing departments Education services Voluntary services 1 Direct care is the term used to include clinical care, social care and public health activity relating to individuals. It also includes activity such as audit and management of untoward incidents where these are carried out by people who have a legitimate relationship for that person s care. The direct care team is made up of registered and regulated professionals with a duty of confidentiality and an obligation to use information both legally and effectively. They are answerable to regulatory bodies such as the General Medical Council, Nursing and Midwifery Council and Health and Care Professions Council. Caldicott Review 2013 page 38. Sure Start teams The police Government departments There may be circumstances where the reasons for disclosure are so important that they override the obligation of confidentiality (e.g. to prevent someone from being seriously harmed). Disclosure may also be required by Court Order or under an Act of Parliament, i.e. there is a statutory or other legal basis for the disclosure. The advice of specialist staff is also sought prior to making disclosures in the public interest or where a Court Order or statutory basis is provided as justification. Section 251 Disclosures may be permitted under section 251 of the NHS Act This allows the Secretary of State for Health to set aside the common law duty of confidentiality in special circumstances. This has to be to improve patient care or in the public interest, such as for important medical research. Applications for approval to use Section 251 powers are considered by the Confidentiality Advisory Group (CAG) who will advise whether there is sufficient justification to access the requested confidential patient information. Accessing your information You have the right of access to your own records as defined in the Data Protection Act 1998 which, with some exceptions, entitles individuals to a copy of information held about them.
5 You may authorise a third party to seek access on your behalf e.g. a solicitor, but we will need your written consent. Where a service user is incapable of managing his or her own affairs, a person appointed by the court to manage those affairs may seek access. Children over 16, and those under 16, who are capable of understanding the significance of their records disclosure, must give their own consent to access. Where there is any doubt that a child under 16 has capacity the judgement will be made by the health care professional in charge of the child s care. Otherwise, authority must be given by an individual who has parental responsibility under the Children Act The Data Protection Act 1998 does not cover the records of deceased patients. Statutory rights of access to these are contained within the Access to Health Records Act Any person with a claim arising from the death of a patient has a right of access to information directly relevant to that claim. Where access may be limited or denied Access may be limited or denied if: Disclosing information may cause serious harm to you; or Where giving access would disclose information relating to or provided by a third person who had not consented to the disclosure. If you require a copy of your records, you must write to: Subject Access Team Pennine Care NHS Foundation Trust HQ 225 Old Street Ashton-under-Lyne OL6 7SR pcn-tr.sar@nhs.net You are entitled to receive some or all of your information but please note a charge of up to 50 may be made for copies of your paper records or a charge of 10 for electronic records. A request for limited information may result in a lower charge. What if the information we hold about you is wrong? You can ask the Trust to correct inaccurate or incomplete information. If the health professional agrees that the information is inaccurate or incomplete, they will correct the records and give you a copy. As far as it is reasonable we will inform those who have been given the inaccurate information. If the health professional does not agree that the information is inaccurate, they will make a note on the record of the point you have brought to their attention.
6 What else? You can have a say in how the NHS uses information about you. If you do not wish personal data to be used or shared in the way that is described in this leaflet, please discuss the matter with us. You have the right to request that your confidential information is not used beyond your own care and treatment and to have your objections considered, and, where your wishes cannot be followed, to be told the reasons including the legal basis. If you agree, you can expect your relatives and friends to be kept up to date with the progress of your treatment. Recording mobile phone numbers We record mobile telephone numbers to enable us to contact you if an appointment has to be rearranged. Some services also provide a text reminder service so that you can be reminded of your appointment. If you prefer not to be contacted in this way, please tell us so we can remove your number from the system. Providing Feedback We value feedback from our patients and their carers and we may occasionally contact you to ask about your experience of our services. This helps us to plan and improve the services we provide. Teaching clinicians Some medical files are needed to teach student clinicians about rare cases. This is an important feature of clinical training. Clinical placements Clinical placements for students commonly take place within the NHS. Students, such as student nurses, medical students, social work students or health care cadets, could be receiving training in the service that is caring for you. This may be when you are an inpatient, or in a community setting such as a day hospital and even, in some cases, when you are being visited by health or social care staff at home. If staff would like a student to be present they will always ask for your permission before that meeting or episode of treatment. If you do not want a student to be present you may refuse without the treatment or care you receive being affected. Occasionally, for assessment purposes, students may request that their supervisor be present and, again, you may refuse if this makes you feel uncomfortable. Your NHS Number, Keep it Safe Every person registered with the NHS in England and Wales has their own unique NHS Number. It is made up of 10 digits for example Everyone needs to use the NHS Number to identify you correctly. It is an important step towards improving the safety of your healthcare. Always bring your NHS number with you to all hospital appointments or quote it if you need to telephone the hospital for any enquires. This will allow staff to check that they have the right patient details by checking this against your NHS number. To improve safety and accuracy always check your NHS Number on correspondence the NHS sends to you.
7 Ways of finding out your NHS Number If you do not know your NHS number, contact your GP. You may be asked for proof of identity, for example a passport or other form of identity this is to protect your privacy. Once you have obtained your NHS Number write it down and keep it safe. Clinical Audit The quality of care provided to you is sometimes reviewed through the process of clinical audit. This may involve members of the health care team or the clinical audit department reviewing patient records. Clinical audits are subject to approval from the Clinical Audit Department to ensure patients notes are only accessed if absolutely necessary, in line with NHS guidelines. Any information collected from this review is anonymised so that individual patients cannot be identified. Research Occasionally we are involved in research for which we would anticipate your direct involvement (especially if taking part in clinical trials). In these cases, the circumstances will be fully explained to you and your express consent required. If you do not consent, then you will not be included in the trial. Sometimes, researchers need access to individual medical files. We will contact you first for your consent (and before this, the researchers must present their case before an Ethics Committee to check that their research is appropriate and worthwhile). Rarely, it may be impractical (or even impossible) to contact individuals for their consent, in which case the researchers must make their case before an Ethics Committee to show that there is enough benefit to the public at large to justify this. Often researchers only require access to medical statistics that can greatly improve our understanding of health and how to treat service users more effectively. In these cases your consent will not be sought as long as we are satisfied that no personal information is needed. Generally, researchers only need information about groups of people, so that no individual information is identifiable. In some cases, researchers may need individual records, but wherever we can, we will provide these in anonymised form. If patients would like to be informed of research that they might be eligible to take part in, please contact the Quality Assurance, Research and Innovation Unit on
8 Patient Advice and Liaison Service The Patient Advice and Liaison Service (PALS) acts on behalf of service users, families and carers to negotiate prompt solutions and help bring about changes in the way that services are developed. As well as providing a confidential advice and support service, PALS will help guide you through the different services available from the NHS. Tel: Comments and complaints We want to learn from comments and complaints about our services. If you have any, please speak with a member of staff. Every effort will be made to resolve any concerns and complaining will not cause any difficulties in your care with us. You can also contact the Trust s Complaints Department via post at Trust Headquarters, 225 Old Street, Ashton-under-Lyne, OL6 7SR. Tel: complaints.penninecare@nhs.net Become a member of our Trust You can be the voice of your community by electing or becoming a governor, find out more about your local mental health and community services, and receive updates, comment on our plans and get invitations to health events. Tel: ftmembership.penninecare@nhs.net Alternative formats If you need help to understand this information, require it in another format such as large print, spoken (on CD) or Braille, or require it in a different language speak to a member of staff.
9 Further information If you want to find out more or have any concerns, then please speak to the staff currently providing your treatment and care. For further information on this or anything else to do with your information, please visit our website or contact: Information Governance Department By By post: Pennine Care NHS Foundation Trust Trust HQ 225 Old Street Ashton-under-Lyne OL6 7SR The Information Commissioner is the regulator for privacy and information rights legislation including the Data Protection Act 1998 and the Freedom of Information Act There is more information available on the Information Commissioner s Office (ICO) website - Working together LIVING Date of publication: October 2015 Reference: 4144/How we use your information - leaflets for patients Pennine Care NHS Foundation Trust
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