Fair Processing in East London

Jigsaw 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 who 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).

The Organisations involved in your Direct Care Team

 

There are a number of different organisations involved in your Direct Care Team and whilst they have the ability to access information held about you they will only access it with your consent. This consent will either be explicit consent (seeking directly from you consent to access your information) or implied consent (where it is obvious that your consent to access the information has been implied by you). Some examples of this are below:

1: Explicit Consent - You arrive at A&E and your Direct Care Team there want to know more detail about your medications. They have not seen you before (or at least for a while) and this is the first interaction with anyone for this particular episode of your care. In this instance the Direct Care Team will ask you to give your explicit consent before they access the information about you in your GP record which will give them more information about your medications history.

2. Implied Consent - Whilst at A&E you have a blood test and then leave A&E. A week later you visit your GP and whilst there you mention the test you had in A&E and ask the GP if they could tell you the result of that test. By asking your GP for that result you have implied that you have given your consent for the GP to see this shared information. The GP then thinks that you may benefit from seeing a specialist in hospital and refers you to have a consultation there and you agree that you wish to go. By agreeing that you wish to be treated by a specialist at the hospital you have implied that you wish the GP to share the information about you with that specialist.

Explicit patient consent is recorded on the system and there is an audit trail so that we know exactly who has accessed what information and when. The audit trail for Explicit Consent is available to the people who hold the original record (for example your GP). Implied consent is not routinely stored as it is based on your behaviour in a given situation which would be difficult to capture for audit purposes. For instance, a nurse that is treating you says to you that another team that is seeing you next needs to know your blood pressure and you roll up your sleeve and extend your arm for the nurse to apply a blood pressure cuff and have your pressure taken. The rolling up of your sleeve, extending your arm and allowing the test to be taken implies that you wish to share your blood pressure with the other team but that would be a hard thing to capture meaningfully in your care record as you have not explicitly said that you give consent.

The local organisations involved in your Direct Care Team include:

  • Barts Health NHS Trust

  • Homerton University Hospital

  • 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

  • St Joseph's Hospice 

  • City and Hackney Urgent Healthcare Social Enterprise

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, patient consent must be provided. 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 system 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

2. 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 and Waltham Forest CCG

  • St Joseph's Hospice 

The East London Patient Record (eLPR) will be adding more organisations and this site will be updated with those details in due course.

3. The Discovery Project - This is a new project looking to create a new data service where the local providers of your care (like the gp practices and hospitals) will link up their data more seamlessly in order to provide you with better quality care. Your local health and social care providers all have their own IT systems which hold your information in silos and this service aims to pull that data together to create a better picture of you and your care needs. One of the main aims of this project is to put you in charge of giving your consent for the use of all of this data so you can say who has access to what and where they can see it. This project is new and is not up and running yet but we will provide you with more information as it progresses and about how you can engage with us on it.

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!

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 across the three Boroughs.

Can anybody see my records?

Definitely not. Only care professionals directly involved in your care will see your personal care information through data sharing and only if you consent to this.

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.

Can I access my records?

Yes. Under the Data Protection Act 1998 you can request access to all information that organisations hold about you. Please contact the organisations directly to request the information.

Can I opt out of my records being shared?

You shouldn't need to opt out. No one will be able to look at your records unless you say yes and they will ask you to consent at every visit. If you do however still want to opt out please contact the organisation who's records you do not want to be shared.

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 these boroughs?

No. your records are only available to the NHS and social care organisations in the City & Hackney, Newham, Tower Hamlets and Waltham Forest boroughs that have signed up to the programme . However 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

Contact us

If you have any queries or want to know more about data sharing or our fair processing please call  or email

You can also write to: