Fair Processing or Privacy Notice….
1 NHS Data Sharing in East London
In East London we can improve the quality of care you receive by sharing the right information about you between our local NHS and social care organisations who are providing you with your direct care. We call this sharing of information Data Sharing and the people sharing this data your Direct Care Team who will be people you will at some point be involved directly in your care be it your GP, or the A&E team when you visit for an emergency, or the social care team looking after you in your home. The sharing of information has always happened (to a lesser degree) with paper processes but systems are allowing us to share more relevant information about you amongst your Direct Care Team helping them to be more efficient and support theirs and your decision making on your care.
This work is being led by your local clinicians who want to help support you receiving the best quality care possible. They want to be as transparent as possible so that you can feel assured that data is being shared with your best interests at heart and they want you to be involved in this as best you see fit.
All of the people accessing and sharing your information (your Direct Care Team) will have some form of direct interaction with you otherwise they will not be accessing your information (in other words the A&E team would only ever access information if you had an emergency and actually attended A&E). The reason they want to access your information is that this can improve the quality of care that you receive from them. Imagine the information or data that is held about you are pieces of a jigsaw and these pieces are held on different systems by the providers of your care. If one of your Direct Care Team wants to make a decision on the best course of action for you, the more pieces of the jigsaw they have, the more they can know about you and your history of care and therefore they can make the most appropriate decision based on you and your needs.
The set of rules we use locally about sharing your information (or data) form our "Fair Processing" arrangements and this site will give you all the information you need to understand how this all works (or places you can go to find out more information).
Data Sharing and the law
The new General Data Protection Regulation (GDPR) is in application from 25 May 2018, and supersedes the UK Data Protection Act 1998 (DPA). With the onset of GDPR the professionals involved in your individual care (or direct care) will be using implied consent from you to see your shared medical records. In order for the sharing of Personal Data to comply with Article 5 of the General Data Protection Regulation it must be fair and lawful and one of the Article 6 conditions must be met. Article 9 conditions must also be met if Sensitive Personal Data or special category data is being shared. The following articles are the ones that apply for sharing of data for the professionals involved in your care:
- A) Article 6 condition - The sharing of Personal Data is permitted under Article 6 paragraph (c) (processing for legal obligation); paragraph (d) (processing for vital interests of data subject); and/or paragraph (e) (public interest or in the exercise of official authority).
- B) Article 9 condition - The sharing of Sensitive Personal Data or Special Category Data is permitted under Article 9 (h) (processing for medical purposes); and/or paragraph (i) (public interest in the area of public health). For the vast majority of sharing we will be relying on article (h) with an implied consent model for direct individual care (more detail below where we talk about the Common Law Duty of Confidentiality). In certain instances, however, we may also rely on paragraph (a) (explicit consent) or paragraph (c) (vital interests) but these will be specified in any sharing agreements or data processing contracts related to those special cases
Common Law Duty of Confidentiality
Common law is not written out in one document like an Act of Parliament (like the Data Protection Act). It is a form of law based on previous court cases decided by judges; hence, it is also referred to as 'judge-made' or case law. The law is applied by reference to those previous cases, so common law is also said to be based on precedent. This duty of confidence means that professionals should not disclose a patient’s personal information to anyone outside the team providing care for them without the explicit consent of the patient. For those providing care for the patient there is an implied consent in place. There are three circumstances where your information can be shared to someone outside of the team involved in your direct care. These are:
- where you have consented to have this information shared
- where disclosure is necessary to safeguard you, or others, or is in the public interest
- where there is a legal duty to do so, for example a court order
Audit, service evaluation and research
We do also use de-identified data to help us to audit our services, do re-evaluation of their outcomes (to help continually improve your care) and for research purposes. This de-identifying process is also called pseudonomisation whereby your distinct personal details (name, date of birth) are either removed or scrambled in such a way as to stop you being identified. This data mainly falls outside of GDPR and the national opt out, as this only applies for identifiable data for secondary use.
Healthcare cannot stand still and we need to constantly strive to improve the services and care you receive and this can only be done by looking at the totality of data to look at outcomes and any trends in those outcomes.
The Organisations involved in your Direct Care Team
The local organisations involved in your Direct Care Team include:
- Barts Health NHS Trust
- Homerton University Hospital
- Barking, Havering and Redbridge University Hospitals NHS Trust
- East London Foundation Trust
- North East London Foundation Trust
- GP Provider Federations
- General Practices
- Community Health Services (on their own or through the organisations they are hosted in)
- City of London Corporation
- London Borough of Hackney
- London Borough of Newham
- London Borough of Tower Hamlets
- London Borough of Waltham Forest
- London Borough of Barking & Dagenham
- London Borough of Havering
- London Borough of Redbridge
- St Joseph's Hospice
- Richard House Hospice
- St Frances Hospice
- City and Hackney Urgent Healthcare Social Enterprise
- London Ambulance Service
How it works
Data sharing securely connects different medical and care computer systems together. When a patient’s records are requested, it collects the information from the different system and shows the information to the requestor. None of the information it collects is stored and none of it can be changed. Because it collects the information only when it is needed, the information is always accurate and as up to date as possible.
Before any information is collected or displayed to a care professional, they must be involved in your individual or direct care. Not everyone can see your shared data, nor should they. It will only be accessed by the people involved in looking after you directly. The Fair Processing Programme uses the secure NHS network to retrieve the information that has been approved to be shared with that care setting and displays a read only view for the care professional to use to support the delivery of care at that specific point in time.
No information is stored or saved within the or the care setting from where it is accessed so there is no need to worry about what could happen to your information without your knowledge or permission. There are two major ways that Data Sharing is taking place in East London.
- 1. The Summary Care Record - The Summary Care Record contains information about your allergies, medications and reactions you have to medications, so that in an emergency or when your GP practice is closed this information is available so that you can be cared for. This is a national programme for sharing your information. For more information please go to www.nhscarerecords.nhs.uk
- East London Patient Record (eLPR) - This is a local programme which shares more information about you than the Summary Care Record to better support your Direct Care Team and your care. Currently this is sharing between the following organisations:
- Barts Health NHS Trust
- Homerton University Hospital
- East London Foundation Trust
- All General Practices in City & Hackney CCG, Newham CCG, Tower Hamlets CCG, Waltham Forest CCG, Barking CCG, Havering CCG and Redbridge CCG
- St Joseph's Hospice
- North East London Foundation Trust
- GP Provider Federations
- Community Health Services (on their own or through the organisations they are hosted in)
- London Borough of Hackney
- London Borough of Newham
- City and Hackney Urgent Healthcare Social Enterprise
- London Ambulance Service
The East London Patient Record (eLPR) will be adding more organisations and this site will be update with those details in due course.
What does it mean to you?
Joined up safer care + More time spent on your care + All of your information in one place = Safer and better care for you! The following sites contain some useful information and videos to help you understand data sharing better:
https://www.nhs.uk/your-nhs-data-matters
https://understandingpatientdata.org.uk/what-you-need-know
Discovery Data Service
The Discovery Data Service is a brand new service in development in east London. Primarily the aim of Discovery is to link up all of the local data held about you to improve direct patient care.
The secondary aim to produce a de-identified (or pseudonymised) linked database for service evaluation, audit, and research.
This service will see all of the data come directly from the local providers (GP Practices, Barts and the Homerton and so on) and will mean that those providers are in control of that data and how it should be best used for your care and to improve the way we operate to deliver your care. There will be stringent Information Governance controls around the usage but these will be managed by us locally (including by you the patients who ultimately own the data) and will mean we can better use our data the ways we know will improve healthcare here locally in east London. This service has been shaped with these main aims:
- To improve direct care for patients by using the totality of their health record from all the local providers in real time
- To use the data to research and improve the quality of services we supply locally
- To support east London in other population health research
This Service is under development so we hope to come back to you and update you when the service starts producing its first outputs.
FAQs
- Why do you need to share my information?
Data sharing will provide health and social care professionals directly involved in your care access to the most up-to-date information about you. This allows the professionals caring for you to more fully understand your needs. Information is already shared by phone and paper records, data sharing simply allows this to happen more efficiently. It does this by sharing appropriate information from your medical and care records between health and social care services involved in your care.
- Can anybody see my records?
Definitely not. Only care professionals directly involved in your care will see your personal care information through data sharing.
- How do I know my records are secure?
By law, everyone working in, or for, the NHS and adults’ and children’s social care must respect your privacy and keep your information safe. Your information is stored on secure computer systems connected on a private health and social care network.
Yes. Under the GDPR you can request access to all information that organisations hold about you. Please contact the organisations directly to request the information.
- Can I object to my records being shared?
You can object to your information being shared by talking to your providers of care. For direct care the people viewing your records are the people directly looking after you and are doing so to give you the best quality care they can. If you do however still want to object please contact the organisation who holds the records you do not want to be shared. It is worth noting that not sharing vital information about you with other organisations involved in your care could affect the quality of care that you receive and there may be circumstances where you objection may not be upheld. For example:
- If it is in the public interest for data to still be shared. For example if there is a safeguarding issue, or in the case of a mental health patient who might be at risk from harming themselves or a member of the public
- If clinical care cannot be provided. For example in referring a patient to hospital and data needs to be shared for the hospital clinician to do their job properly. In this instance obviously the patient can then choose not to have the treatment and therefore not have their data shared.
- If systems are not well enough developed enough to not share the information. For example GP Systems are relatively well developed and can handle objections a lot more easily than other providers but they still may be asked not to share something which the system cannot do. In this instance points 1 and 2 above would apply.
- What information will be shared?
Your shared record will contain a summary of your most up-to-date, relevant health information which includes things such as:
Your recent diagnosis and test results;
What allergies you have;
What medications and treatment you currently receive.
Any Current or Past (and significant) Illnesses
Encounters and Referrals
- Can everybody see everything on my medical and care records?
No. We are working very carefully, supported by health and social care professionals, to make sure only relevant information is shared into specific care settings.
- Can my records be accessed by health and social care professionals outside of my borough?
Yes they can but only with other professionals who are caring for you directly. On top of the programmes mentioned above there is also the Summary Care Record is a national programme and as such means that it is available to care organisations outside of these boroughs (but again only for direct care purposes). The Summary Care Record contains important health information such as:
Any prescription medication a patient is taking
Any allergies a patient may have
Any bad reaction to any medication a patient may have previously had
More information about the Summary Care Record can be found at www.nhscarerecords.nhs.uk
If you have any queries or want to know more about data sharing or our fair processing please contact your local provider that holds the information you wish to discuss.
If you wish to request your medical records or have any questions or queries please write to Practice Manager, The Bailey Practice, Walthamstow, E17 9HS. Alternatively, come to the surgery in person or contact the surgery via telephone on 020 8520 5138. Alternatively, please come into the practice in person to request the records verbally.
Our Data Protection Officer is Radha Muthuswamy - r.muthuswamy@nhs.net
Healthy.io
ACR project for patients with diabetes (and/or other conditions)
The data is being processed for the purpose of delivery of a programme, sponsored by NHS Digital, to monitor urine for indications of chronic kidney disease (CKD) which is recommended to be undertaken annually for patients at risk of chronic kidney disease e.g., patients living with diabetes. The programme enables patients to test their kidney function from home. We will share your contact details with Healthy.io to enable them to contact you and send you a test kit. This will help identify patients at risk of kidney disease and help us agree any early interventions that can be put in place for the benefit of your care. Healthy.io will only use your data for the purposes of delivering their service to you. If you do not wish to receive a home test kit from Healthy.io we will continue to manage your care within the Practice. Healthy.io are required to hold data we send them in line with retention periods outlined in the Records Management code of Practice for Health and Social Care. Further information about this is available at: https://lp.healthy.io/minuteful_info/.
Complaints procedure
If you have any comments or complaints please contact the surgery on 02085205138 to discuss with Dr Jennifer Bailey. If you wish to put your comments/complaints in writing, please use our complaints leaflet which can be handed in to the surgery or sent via email to wfccg.shernhallsurgery@nhs.net
Alternatively, the complaint can be addressed to the PALS Officer at the PCT, telephone number 0203 594 2040 or via email at pals@bartshealth.nhs.uk. If you are still dissatisfied you can complain to the ombudsman, Parliamentary and Health Service Ombudsman, Millbank Tower, London SW1P 4QP. Tel: 0345 015 0433 or fax: 0300 061 4000 or visit www.ombudsman.org.uk
Violence Policy
The NHS operate a zero tolerance policy with regard to violence and abuse and the practice has the right to remove violent patients from the list with immediate effect in order to safeguard practice staff, patients and other persons. Violence in this context includes actual or threatened physical violence or verbal abuse which leads to fear for a person’s safety. In this situation we will notify the patient in writing of their removal from the list and record in the patient’s medical records the fact of the removal and the circumstances leading to it.