Northamptonshire Care Record

Your local health and social care organisations have a duty to keep complete, accurate and up-to-date information about your care so that you can receive the best possible support. When appropriate they also share information with other professionals that are supporting you, which could include GPs, hospital-based specialists, social workers, nurses, psychologists and health visitors. To support this a new process has been put in place in Northamptonshire, which electronically joins up your care records, at the point of care, from your local hospital, GP practices and community services. This is called the Northamptonshire Care Record (NCR).

The following organisations are participating in the Northamptonshire Care Record:

• Kettering General Hospital NHS Foundation Trust
• Northampton General Hospital NHS Trust
• Northamptonshire Healthcare NHS Foundation Trust
• Northamptonshire GP practices
• East Midlands Ambulance Service NHS Trust
• North Northamptonshire Council
• West Northamptonshire Council
• Northamptonshire Children's Trust

The programme is supported by:

• NHS Northamptonshire Integrated Care Board (NICB)

There has been no single system used across Northamptonshire by healthcare providers to enable efficient collaboration on your direct care. Previously, patient information and care records will have been shared via traditional methods such as secure post, fax or email, which can be slow and, at times, unsafe and unreliable. Professionals can now use the Northamptonshire Care Record to view your details automatically through the computer systems they have access to already, allowing better decision-making and continuity of care to be provided. Information will be used by those treating or assessing you to ensure your care and treatment is safer, easier and faster. Information is only accessed by those people directly involved in your care, for example by a hospital doctor or your GP, who would be able to see prescribed medications or treatment you are receiving.

The Northamptonshire Care Record contains up-to-date and relevant care information about you, at the time you are speaking to the care professional.  Not all information is shared by all providers. Examples of information that is shared include:

• Your name, address and NHS number to help identify you correctly
• Details of people involved in your care, appointments and visits
• Medicines you have been prescribed and details of medication reactions and allergies
• Test results, referrals, clinic letters and discharge information to ensure people caring for you have all the information they need to treat you

Certain sensitive information is never shared, for example sexual health information.

Under the Data Protection Act 2018, the data that’s shared in the Northamptonshire Care Record is being shared for the purposes of direct care. This means that consent from the patient or service user is not needed to create a care record.

However, the processing of personal data in the delivery of direct care and for providers’ administrative purposes meets the following Article 6 and 9 conditions of the: Data Protection Act 2018/General Data Protection Regulations 2016:

Article 6(1)(e) ‘…necessary for the performance of a task carried out in the public interest or in the exercise of official authority…’.

Article 9(2)(h) ‘necessary for the purposes of preventative or occupational medicine for the assessment of the working capacity of the employee, medical diagnosis, the provision of health or social care or treatment or the management of health or social care systems and services...”  

Health and social care services are under legal obligations to share information for the purpose of direct care.

We also recognise your rights established under UK case law collectively known as the “Common Law Duty of Confidentiality”

Your direct care providers such as your GP, hospitals, ambulance services and local council make the decisions about how your information is used. They exercise overall control of your information and are ultimately in charge of and responsible for its processing for the purposes of providing your direct care. They are known as joint controllers in accordance with Data Protection law.

To provide the best treatment and support care professionals need access to the most up-to-date information about you in one place. This information can be from a range of services including hospitals, community services and your GP practice. Sharing information between these services will allow those that are caring for you, especially when more than one professional is involved, to make better joined-up decisions and work with you more effectively. Above all, professionals involved in your care will have access to the same information which will mean less repetition, as well as faster and safer care and treatment. For example, if you go into hospital in an emergency, the person treating you will know what medication your GP has prescribed for you. It also means that when you visit your GP, they can see what treatments or tests you have received in hospital.

Only professionals who are directly supporting your care have access to your care record and wherever possible they will inform you that they are accessing your care record. This may not be possible every time (in an emergency, for example); however, each time a person accesses your information there will be a clear record or audit of it. You can ask for further information from your care professional or to opt-out of sharing your information at any time. See Section 11 below for more details on how you can opt out.

The Northamptonshire Care Record system is hosted by NHS Northamptonshire Integrated Care Board (NICB) on behalf of the other NHS and social care organisations in our county which make up Integrated Care Northamptonshire. It is overseen by senior managers and clinicians across all partner organisations.

There are rules in place to make sure that only those directly involved in your care will use the Northamptonshire Care Record to view information about you, and only on a ‘need to know’ basis. Also, certain sensitive information is never shared, for example sexual health information. Where possible a care professional will inform you that they are using the Northamptonshire Care Record to access your details. This will ensure you are fully aware and given the opportunity to find out more information about the Northamptonshire Care Record.

You can choose to ‘opt out’ and not share your information if you wish. Opting out will mean that medical professionals may not always have access to your full medical record, including in the event of emergencies. If you still prefer your information not to be shared, please talk to your GP practice and submit a formal objection which will then be reviewed.

Your care information will always be updated locally by the services and professionals that are supporting you and these updates will be present in your care record the next time it is viewed.

The Northamptonshire Care Record is a system that has undergone robust risk assessments and testing to ensure it meets the technical and security requirements of Data Protection law as well as those of the NHS. Your information will always be updated locally by the services and professionals that are supporting your direct care and it will only by accessed by them on a need-to-know basis.

Whenever possible, professionals will inform you that they are accessing your care record. This may not be possible every time, for example in an emergency. However, each time a person accesses your information there is a clear record of it and information on this can be provided to you by your GP. Only staff members who are directly supporting your care will have access to your care record.

Yes, you have the right to see the data that is being shared about you and to have it amended or removed if you think it is inaccurate (there is no right to have accurate medical records deleted except when ordered by a Court of Law). The right to access your record is known as ‘the right of subject access’. You can make a request for this information from a care provider. Each care provider has an agreed right of subject access process in accordance with Data Protection laws. The information contained within the Care Plan section of the Northamptonshire Care Record will be appropriately processed and issued by the care provider receiving the request.

If your health or care provider holds information about you, and you make a subject access request they will: 

• Give you a description of it
• Tell you why it is being held
• Tell you who it could be shared with
• Let you have a copy of the information in an intelligible form.

If you would like to make a ‘subject access request’, you will need to contact your health or care provider’s Data Protection Officer verbally or in writing. You may also find specific details on how to make a subject access request on your care providers website. 

The data will be retained in line with the law and national guidance.

The Northamptonshire Care Record provides a more detailed view of your health, care and treatment records from your local health and social care organisations in Northamptonshire. The Summary Care Record (SCR) is used nationally and contains important information from the record held by your GP practice. You can ask to view or add information to your SCR by visiting your GP Practice.

Access to SCR information means that your care in other settings away from your GP Practice is safer, reducing the risk of prescribing errors. It also helps avoid delays when you need urgent care.

At a minimum, the SCR holds important information about;

• your name, address, date of birth and NHS number
• your current medication
• allergies and details of any previous bad reactions to medicines you may have.

Some patients, including many with long term health conditions, have previously agreed to have additional information shared as part of their Summary Care Record. This additional information includes information about significant medical history (past and present), reasons for medications, care plan information and immunisations.

By including this additional Information in your SCR, health and care staff can give you better care if you need health care away from your GP practice:

• in an emergency
• when you're on holiday
• when your surgery is closed
• at out-patient clinics
• when you visit a pharmacy

Additional Information includes extra information from your GP record, including:

• health problems like dementia or diabetes
• details of your carer
• your treatment preferences
• communication needs, for example if you have hearing difficulties or need an interpreter

When you are treated away from your usual doctor's surgery, the health care staff there can't see your GP medical records. Looking at your SCR can speed up your care and make sure you are given the right medicines and treatment.

The only people who might see your Summary Care Record are registered and regulated healthcare professionals, for example doctors, nurses, paramedics, pharmacists and staff working under their direct supervision. Your Summary Care record will only be accessed so a healthcare professional can give you individual care. Staff working for organisations that do not provide direct care are not able to view your Summary Care Record.

Before accessing a Summary Care Record healthcare staff will always ask your permission to view it, unless it is a medical emergency and you are unable to give permission.

If you already opted out of the Summary Care Record you will still need to let us know if you want to opt out of letting health and care professionals use the Northamptonshire Care Record to access information about you when they treat you.

You can visit the NHS Digital website for more information on the SCR.

To support direct care, clinicians can have access to your full record for use as part of direct patient care analytics.  The patient identifiable summary clinical information is available in the NARP for these purposes and clinicians can then link back into the Northamptonshire Care Record for a more detailed view of your care record where deemed necessary.

The NARP enables the sharing of information for the purposes of care intelligence, research and planning. These are classified as secondary uses of your information.

Currently, your information held in separate systems such as social services is not visible to health care providers, and health care provider information is not visible to social care providers. This leads to silo-based decision making, negatively impacting on care planning, and ultimately impacting on you.

The NARP will provide joined up health and care data to support population health reporting, real time operational dashboards and patient level decision support tools that can be embedded into the Northamptonshire Care Record. 

The NARP segments data into:

• anonymised – this means your identifying particulars or details are removed so you cannot be identified
• pseudonymised – meaning your identifying particulars or details are replaced with a value (e.g. reference number) which does not allow you to be identified
• patient level data – this segment will have all your identifying particulars or details intact so you can be identified.

Access to these segments are controlled by Role Based Access Controls which means that only those involved in your direct care (such as your GP, clinicians, paramedics) will have access to your patient level data.  

You will be able to opt-out of use of your confidential patient information for secondary purposes unless there is a specific exemption through the National Data Opt-Out process that is applicable. Further information on National Data Opt-Out is available on the NHS Digital website.

You will be informed via your GP about your option of Opting-out of data sharing for secondary uses. If you have already opted out of sharing your data for purposes other than direct care, you information will be excluded from the flow of data from the GP systems into the NARP.

No, the Northamptonshire Care Record is only ever used for direct patient care, treatment and support by professionals involved in your care.

No, the Northamptonshire Care Record is only ever used for direct patient care, treatment and support by professionals involved in your care.

The Northamptonshire Care Record allows professionals involved in your care to view your care information and improve the services they provide. The system is growing and over time will include your care records held by organisations from surrounding areas. In the meantime, organisations and professionals outside of Northamptonshire will still continue to share information in other ways, which may take a little more time.

No, your personal information will never be shared with or sold to external or private organisations including research or insurance companies.

Currently the system combines records from all local GP practices in Northamptonshire, Northampton and Kettering General Hospitals and Northamptonshire Healthcare NHS Foundation Trust (NHFT). Eventually the shared records will also include data from other local organisations, including social care providers, the voluntary and community sector, and East Midlands Ambulance Service.

Please contact your care provider’s Data Protection Officer to raise your concerns.

All patients registered at that GP practice can request that their GP shares their information with other health and care professionals via the Northamptonshire Care Record.

• Yes, currently the system combines records from all local GP practices in Northamptonshire, Northampton and Kettering General Hospitals and Northamptonshire Healthcare NHS Foundation Trust (NHFT). 
• The following information is now available:
  • Patient Demographics from the Spine
  • General Practice Data – EMIS & TPP GP Practices
  • Range of Acute Hospitals Data – Kettering General Hospital & Northampton General Hospital
  • Select data from Northamptonshire Healthcare NHS Foundation Trust
• At a later stage data will be added from:
  • North and West Northamptonshire Council (adult and children’s social services)
  • East Midlands Ambulance Service

Please share with us your experiences of using the system so far. Your feedback and thoughts will help us shape future developments and allow us to improve the system so that you can deliver better and safer care for patients. Please take a few minutes to complete this short feedback form. 

We are keen to learn more about how you use the system and how it could be used further to meet particular goals and outcomes. Based on your insight and experience please submit a use case.

This use case should be a description of how the system can be used to achieve a specific goal.  We are grateful for your thoughts and we will review your submission and consider what could be enhanced as we continuously work to develop and improve the system.  

Please submit your case on the online use case form. 

A range of resources have been produced to accompany the launch of the Northamptonshire Care Record including posters, screensavers and patient leaflets. These can be downloaded for use on the 'Resources to Download' on the NCR homepage . Hard-copies of posters and leaflets can be requested by contacting northantsicb.northamptonshirecarerecord@nhs.net

Ivy is an 81-year-old widow living on her own at home, where she wants to stay.

Ivy takes medicines for type 2 diabetes and was in hospital recently after a fall. She has regular contact with social care, intermediate care and diabetes care teams, plus her GP.

In one day she can talk to several different care professionals and gets frustrated at having to repeat her story, because they don’t have access to a common set of notes.

Ivy feels as if she is the main line of communication between organisations and worries that she might forget to share something important.

Rita is an A&E triage nurse and is on duty in the emergency department (ED) at Northampton General Hospital when Ivy arrives by ambulance. She was found on the floor at home, cold and confused.

The ambulance crew have already asked Ivy about her history, medications and allergies. Rita doesn’t have this information so she has to ask Ivy it all again.

Ivy worries that she has missed something important, so Rita calls her GP. This takes Rita away from directly looking after people for about 15 minutes. Precious practice time is also taken up printing and faxing a summary of Ivy’s records through to the hospital.

If it had been busier in the emergency department Rita would not have had time to do this and would have had to rely on the information Ivy was able to provide.