The Summary Care Record
www.summarycarerecord.info
This non-commercial website was written by Dr Neil Bhatia, General Practitioner (GP)
Records Access Lead, Caldicott Guardian, Information Governance Lead, Data Privacy Officer, Data Protection Officer, Data Autonomy Advocate.
Twitter: @docneilb
This is a personal website and in no way affiliated with any GP surgery, Clinical Commissioning Group. or any other organisation.
Visit www.nhsdatasharing.info to find out about the very many ways by which information from your electronic GP record is, or can be, made available to others.
There is no third-party user tracking technology present on this website.
See my privacy policy
This website aims to provide information to everyone about The Summary Care Record (SCR) so that you can make an informed decision about opting-out or not.
This site describes:
The official Summary Care Records website is here.
You can find out about all of the NHS Databases, and other NHS data sharing schemes, including care.data2/GPDPR, via www.nhsdatasharing.info
When it come to how your GP-held medical information is used:
Primary uses are uses of data for the main purpose for which they were originally collected directly from the individuals concerned.
For your GP record, this means making that information available, to healthcare professionals that you are seeing, for your direct medical care.
You can download a simple factsheet about data sharing between healthcare professionals here.
You have the right to opt-out of allowing your medical record to be shared, or be directly accessible, for primary purposes - for your direct medical care - beyond your GP surgery, if you so wish.
This may limit the opportunity for certain health professionals (other than those within your GP surgery) to directly access aspects of your electronic GP record in a particular way.
However, it in no way limits all of the other and many ways that your medical information can be made available to those who require it.
That information can, is, and always will be made available to those who require it by your GP, whether directly, by phone, fax, text, letter, email, e-referral or e-prescription.
That information can be made available by you - the patient - directly, by temporarily giving the health professional secure online access to your medical record, or by many of the other ways in which you can share information with health professionals outside of the surgery.
An example of preventing a primary use of your GP record would be opting out of the Summary Care Record.
You can opt back in to primary uses of your GP record at any time in the future.
You can opt back in and allow all the primary use schemes to extract and upload, or stream your data, or you can opt back into each scheme individually, as you prefer.
Secondary uses are uses of existing data for purposes other than those for which they were originally obtained.
For your GP record, this means making that information available, to anyone (not just within the NHS), for purposes other than providing your direct medical care.
Examples of secondary uses include, research, audit, healthcare planning, "population health management", commercial and even political uses.
You can control the use of your medical records for secondary purposes by means of the Type 1 and National Data opt-outs.
You can download a simple factsheet about the Type 1 secondary uses opt-out here.
The National Data Opt Out
On 25th May 2018, NHS Digital launched the National Data Opt Out (NDOO), which replaced the GP Type 2 opt-out.
You can find information on the NDOO:
The NDOO is nothing new. The Type 2 opt-out has been around for a number of years.
The National Data Opt Out doesn't stop you contributing to any research where you are asked first.
It only stops the use of your confidential medical information where you are not asked before your data is taken and used.
COVID-19 and The Summary Care Record
NHS Digital implemented changes to the National Summary Care Record during COVID-19. This is a mandatory change, as enabled by Regulation 3(4) of the Health Service Control of Patient Information Regulations 2002.
This means that, for a temporary period of time:
That additional information will be available to healthcare professionals working in, for example, Accident and Emergency.
You can find out about this mandatory change from the basic, core, Summary Care Record to this additionally enriched Summary Care Record here.
Please be assured that:
Index to sections
Summary Care Records in a nutshell....
Summary Care Records - what has happened to my GP record ?
A central NHS computer system has been gradually introduced across England called the Summary Care Record (often referred to as the "NHS Database"). The Summary Care Record is meant to assist healthcare professionals, outside of your GP surgery, when you see them for direct medical care.
Medical data from your GP records is being extracted and uploaded, on a continuous basis, to a central database run by the NHS Digital. The data will then be made available to those who have access to the Summary Care Record by means of an NHS Smartcard.
Your data is uploaded by default, unless you actively object – an "opt-out" mechanism.
That is, if you do and say nothing, your data will be uploaded, and will continue to be uploaded.
NHS Digital believes that everyone should be assumed to be happy to have their information uploaded and be required to formally object if not.
The Summary Care Record is not an "emergency care summary". Your uploaded information can and will be accessible not just to emergency doctors and nurses, not just in Accident and Emergency departments or GP out of hours centres, and not just when your GP surgery is closed. It is used, and will be further used, for routine medical matters.
Can GP surgeries refuse to upload records to the Summary Care Record without their patients' explicit consent ?
NO.
NHS Digital has mandated all GP surgeries to upload Summary Care Records, under an opt-out system.
Who will be the data controller for my uploaded record ?
The data extracted for the Summary Care Record will be stored on NHS Digital national servers and not on GP systems.
NHS Digital is the data controller for all data stored in Summary Care Records.
As the data controller, NHS Digital alone decides the purposes for which your uploaded data is, or will be, processed and the way in which your uploaded data is, or will be, processed. NHS Digital alone decides who has access to your records, and whether or not to seek your consent for any such release.
Whilst your GP controls your medical records as held by your surgery, your GP is not the data controller for any records uploaded and stored in your Summary Care Record.
Your GP will not be able to:
A Core Summary Care Record
At first, the data uploaded from your GP records will comprise of "core" data, and this phase is known as the initial summary. This will occur if you have not specifically opted-out.
If you have opted-out, no clinical information whatsoever is uploaded and a completely blank record is created instead.
Demographic data (your name, address, DOB, telephone number, GP details etc) has already been uploaded.
"Core" data consists of:
Core data is the minimum data that will be uploaded to the Summary Care Record.
More data can and will be uploaded to it if you should want - or if you're not careful.
The core data will be updated in your Summary Care Record automatically as your GP prescribes further medication, or if you develop allergies or adverse reactions to medicines. It is then known as your "GP summary".
You cannot stop a record of the medication that your GP prescribes from being automatically uploaded to the Summary Care Record, even if this is medication clearly used to treat sensitive or embarrassing conditions, and nor can your GP stop this upload. It is often easy to deduce a patient's diagnosis from the medication being used to treat him or her.
An enriched Summary Care Record
The Summary Care Record was never - ever - going to be just a "summary".
If you give your consent, your SCR can have additional information automatically added to it - a process known as "enrichment" or "enhancement".
Additional (or "supplementary") data from your GP record will then be uploaded to the Summary Care Record, automatically and repeatedly, resulting in an enriched SCR.
Some information can be added with the agreement of both you and your GP.
Some information won't be uploaded, for example details about gender issues, IVF and assisted conception, STIs, and terminations of pregnancy.
But potentially vast amounts of information from your medical record will be added should you agree to an enriched SCR.
Some of the information automatically uploaded might be sensitive, and you may not be happy for it to be visible on your SCR.
The overwhelming majority of additional information added to an enriched SCR will take place automatically and invisibly, by your GP's surgery software system. Only a minority of information will be added following explicit agreement between you and your GP.
If you are thinking of allowing your SCR to be enriched (perhaps your GP has suggested this to you), then please do read this factsheet for patients first.
If you are a GP using EMIS Web, and considering offering enriched SCRs to your patients, then you will find this guide from NHS Digital very useful.
The following information about enriched SCRs refers to GP surgeries running EMIS Web software. If your surgery runs SystmOne, further information can be found here.
When your SCR is set to enriched, information is automatically uploaded in addition to the core information of medications, allergies and adverse reactions, and will include:
The amount of potential information automatically uploaded as soon as you give consent is huge.
Look at this document for a list of such items, otherwise known as the SCR Inclusion Dataset.
The information added to the SCR will include free text associated with that item.
Some information will not automatically be included, and you can see such information here.
Will I be asked for my permission each time additional information about me is to be uploaded to my enriched Summary Care Record?
NO.
The explicit consent given by you to have an enriched SCR will be taken as enduring (permanent) consent for continuously and automatically uploading additional information.
Information and free text, including significant diagnoses, will be automatically uploaded to your enriched SCR.
You might be asked for your permission before certain items are uploaded - but it is your GP's decision as to whether your explicit permission is sought on each occasion.
Can I prevent particular items about me, as defined in the SCR Inclusion Dataset, from being uploaded to my enriched Summary Care Record?
NO.
The information will be automatically uploaded - there is no way to stop it, neither by you nor by your GP.
Your GP can restrict some items (for examples significant diagnoses) from appearing in your enriched SCR - but only by amending your GP medical record and marking that item as "Confidential".
Can I get items about me, as defined in the SCR Inclusion Dataset, deleted from my enriched Summary Care Record?
NO.
Once uploaded, it is not possible to remove automatically included information (as defined by the SCR Inclusion Dataset) from the SCR (without reverting to a core SCR).
Be very careful when agreeing to an enriched SCR. Know what information you are allowing about yourself to be uploaded and made available to others.
Please do read this factsheet for patients first.
Your GP can show you what your enriched SCR looks like, at any time. You just have to ask.
You can change your mind at any time and ask for your SCR to revert back to a core SCR, or you can opt-out completely.
Here is an example of a SCR with additional information.
How do I control enrichment of my Summary Care Record ?
There is a setting (or flag) on your medical record that controls what data, if any, is stored within a given SCR. This is known as the National Summary Preference, or SCR Preference flag.
The flag can be set in a number of ways. It can be set directly by your GP (using the existing surgery software) if your surgery is enabled to do so, or it can be set by your GP adding a specific read code (or electronic "flag") to your GP-held electronic record.
The default setting is implied consent for a core SCR.
The SCR Preference flag is set as Implied consent for medication, allergies and adverse reactions only
This is the setting that will be set if you neither opt-out nor opt-in.
Whilst this setting remains in force, only a core GP summary will be uploaded and your SCR cannot be enriched by your GP.
If you say or do nothing as regards opting out of the SCR then your preference flag should remain on this setting. It is the assumption made if you do not opt-out.
What are my choices ?
You have three choices.
① No Summary Care Record whatsoever
If you do not want to have data extracted from your GP record, and uploaded to a Summary Care Record, then you need to opt-out.
Your GP will then :
Whilst this setting remains in force, no SCR will be created for you.
② A Core Summary Care Record
If you want a SCR, and want your SCR to remain as the default, that is core data only, and not enriched with further data from your GP record, then you need to tell your GP.
Your GP will then :
Whilst this setting remains in force, only a core GP summary will be uploaded and your SCR cannot be enriched by your GP.
③ A Summary Care Record enriched with additional information
If you want your SCR to be enriched with further data from your GP record, then you need to tell your GP.
Your GP will then :
The choice is yours - take control of your medical data if you choose to have a Summary Care Record.
Make sure your GP knows what type of Summary Care Record you want. Do not leave it to chance.
Be aware of the consequences of allowing an enriched SCR (a Summary Care Record with additional information).
Can I change from a core SCR to an enriched one ?
YES.
It is easy to make your basic (core) SCR into an enriched one. Just ask your GP.
Your GP will simply change your preference setting to Express consent for medication, allergies and adverse reactions, AND additional information
Can I change from an enriched SCR to a core one ?
YES.
It is easy to revert your enriched SCR back to a basic (core) one.
Just ask your GP to set your preference flag back to Express consent for medication, allergies and adverse reactions only
What about my children's records ?
NHS Digital is uploading everyone's medical records, no matter how young or old you are.
Your children's medical records will be uploaded too unless you opt them out.
Children under the age of 16 years old will not be written to about the Summary Care Record before their records are uploaded; it will be up to their parents or guardians to decide whether to discuss it with them or not.
The uploaded data may refer to confidential data which the child provided to their GP perfectly legitimately without parental knowledge.
When your children reach their 16th birthdays, they will not be automatically written to about the Summary Care Record and their uploaded data.
But when your children are old enough to understand and make a decision for themselves about the storage of their data in his way, they will not be able to get those records completely deleted should they want.
Do I need my GP's permission before oping-out my children ?
NO.
Absolutely not.
You do not need to see, discuss with or seek the permission of your GP (or anyone else for that matter) before opting your children out of the Summary Care Record.
The decision to opt-out your children (or opt-in to it) is yours to make, after discussion with your children as appropriate.
In exceptional circumstances, your GP might contact you, as a parent/guardian, to discuss whether opting-out is in the child's best interests. But (in my opinion) this would be extremely rare.
If your child's medical history was so complex, serious or life-threatening then almost certainly other methods of making your child's medical information available to others will already have been considered.
If you are uncertain about opting your children in to, or out of the Summary Care Record then you are welcome to discuss it with your GP. But you are under no obligation to.
New babies will automatically get a Summary Care Record when they register at the GP practice.
You will need to opt-out your newborn if you do not want them to have Summary Care Record.
Can I get my uploaded data deleted from the Summary Care Record ?
NO.
Once your medical data has been uploaded to the Summary Care Record, it will be extremely difficult, if not impossible, to get your data completely deleted.
If you decide you no longer want your medical records on this database, or if you discover that your records have been uploaded without your knowledge or your understanding or your consent, you will not be able to get your data deleted. Your "visible" record can be blanked out or masked, but your medical records - and your childrens' records - will still be stored intact and indefinitely on the Summary Care Record database.
If your records are "accidentally" uploaded, your GP will not be able to get them deleted for you. Your GP will not be able to put things right.
When your children are old enough to understand about the Summary Care Record, they will not be able to get their uploaded data deleted if they want.
NHS Digital do not provide any "Right to Erasure", as you can see in their SCR GDPR information.
But can I opt-out a a later date, after my SCR has been created ?
YES.
The very same code that is added to prevent the uploading of medical records to the SCR in the first place is used to "blank" or "mask" a "visible" SCR (so called "logically deleted").
Your GP will either add the appropriate read code to your GP-held records or your GP can set your decision to no longer have a Summary Care Record directly via the surgery GP preference flag software.
This will limit those who could clincally access your data, but all your uploaded data will remain intact and archived on the Summary Care Record database forever (i.e. not "physically deleted").
Can I opt back in, at a later date, if I have opted-out ?
YES.
You can opt back in at any time and have a Summary Care Record created.
For example, you can choose to opt-out now and only opt-in once you are certain that your local Accident & Emergency department and your local GP out of hours centre are both accessing and viewing Summary Care Records.
Access to my Summary Care Record
Will I be asked for my permission before my Summary Care Record is looked at ?
YES.
Well, you should be. This is known as "permission to view".
In certain situations though, known as "Emergency Access", your permission isn't required, as long as whoever is accessing your data states that they feel that it is "in the public interest" not to ask you, or if your consent cannot be provided (if you are in a coma, for example).
You should be asked every time your SCR is accessed.
Can I find out who has accessed my uploaded SCR, and when ?
YES.
But it's not easy.
If you agree to have your records uploaded to the Summary Care Record then you will not be informed each and every time anyone accesses your medical record, or informed at regular intervals as to how many times your record has been accessed and by whom. The NHS will not volunteer this information to you. You will have to ask.
The Data Protection Act gives you the right to find out this information. But it will be time consuming, and you will have to do this regularly if you wish to monitor and protect your uploaded data.
Your GP cannot apply on your behalf, not can your GP tell you the number of times that your uploaded data was accessed and by whom.
Your GP is not the data controller for the information uploaded under the Summary Care Record - NHS Digital is.
So you will have to apply to NHS Digital for this information, under a DPA subject access request.
Details of how to do apply to NHS Digital can be found here.
Who has access to my Summary Care Record ?
The Summary Care Record was never, ever, going to be an "emergency care summary" only, even if it was sold as that to get the project going.
It was always going to be a stepping stone to the widespread dissemination of medical information extracted from your GP record, in multiple settings, and to a multitude of people.
Anyone with an NHS smartcard and the appropriate permissions (RBAC roles B0257, B0264, B0370) on the card can access any Summary Care Record.
The NHS Smartcard works just like the chip and pin bankcards.
Summary Care Records can be accessed within GP practices directly (via their system software) or, via a web-based application, anywhere across England where there is an NHS (N3) network connection.
Anyone can have the appropriate RBAC permissions added to their smartcard.
Access to the Summary Care Record is not restricted to doctors and nurses working in Accident & Emergency departments or GP out of hours centres.
Soon, outpatient departments in hospitals, and medical rooms in police stations will have access.
In some trusts, hospital pharmacists already have access to uploaded information in the SCR.
Your GP does not authorise them - CCGs, hospital trusts and organisations do.
Your GP cannot stop those activity codes being added to any smartcard.
Your GP is not the data controller for the information uploaded under the Summary Care Record - NHS Digital is.
Will anyone actually look at my Summary Care Record if I attend Accident & Emergency or a GP out of hours centre ?
The probability of your Summary Care Record being accessed, looked at and used within a consultation in any given setting somewhere in England remains low at present.
Relatively few organisations across England are actually set up to access and use the Summary Care Record.
Even if it is available at a given healthcare location, there is no guarantee that the doctor or nurse seeing you will access and use it. Many clinicians do not use smartcards, and so cannot access the Summary Care Record.
Many clinicians simply do not have the time to try to access the Summary Care Record, in addition to entering data into their own electronic patient records system.
You can ask your GP whether doctors and nurses at your local Accident & Emergency department or GP out of hours centre are actually using the Summary Care Record, and using it reliably.
If not, you may wish to wait until they are before allowing your records to be uploaded or accessible.
In North East Hampshire, only the pharmacy department at Frimley Park Hospital is enabled to view the SCR.
The Accident & Emergency department is not currently using the SCR.
The local GP out of hours centre, North Hants Urgent Care, does not currently use the SCR.
The local ambulance service, SECAMB, is not currently using the SCR.
Community staff (e.g. district nurses and health visitors, from Frimley Park Hospital and Southern Health) are not currently using the SCR.
The only organisation locally that has access, or uses, the SCR is SCAS NHS 111.
Do I need to agree to have a Summary Care Record before I can email my GP or surgery, request a repeat prescription by email or online, book an appointment with my GP online or look at my medical records ?
NO.
You can do all of those without having a Summary Care Record.
Opting out of the SCR will have no effect on you securely accessing your medical record online .
Access to your GP electronic record in this is not via the SCR.
You can find out about accessing your medical record online in this factsheet. EMIS is one GP software system that already offers this, but the other GP software systems do this as well.
If you are interested in obtaining secure records access then just register for it at your GP surgery.
In addition, the SCR has absolutely nothing to do with the ability to securely access some aspects of your hospital records online, again only at your explicit request.
These portals include My Medical Record and Patient Portal and Patient View and Patients Know Best .
Is secondary uses the same as the Summary Care Record ?
NO.
Secondary uses and the Summary Care Record (SCR) are two entirely separate purposes.
For further information about secondary use schemes, please visit www.nhsdatasharing.info
The Summary Care Record is an example of a database that processes your data for primary medical uses only, that is for the provision of direct medical care by healthcare professionals.
The National Audits and risk stratification are examples of schemes that processes your data for secondary uses only, that is for purposes other than your direct medical care by healthcare professionals.
You will still need to opt-out to prevent secondary uses of your GP record, such as risk stratification, even if you have already opted out of the Summary Care Record.
Summary Care Record opt-outs will not prevent secondary uses of your GP record.
Opting out of one does not mean that you have automatically opted-out of the other.
You can have a Summary Care Record but opt-out of secondary uses
You can agree to secondary use extractions but opt-out of the Summary Care Record
Opting out of either secondary use extractions or the SCR, or both, will not in any way affect the medical care that you receive from your GP surgery.
The National Data Opt Out has no effect on the Summary Care Record.
Is Pharmacy Access the same as the Summary Care Record ?
NO.
Pharmacy Access and the Summary Care Record (SCR) are two entirely separate projects.
For further information about Pharmacy Access, please see www.nhsdatasharing.info
Pharmacy Access is an opt-in scheme that allows a nominated local pharmacy to be able to electronically request medication on your behalf, and allow the pharmacy to view a clearly defined subset of your GP medical record.
Whereas the Summary Care Record makes your GP record information accessible all across England, Pharmacy Access limits this to just one, nominated, pharmacy.
No data is extracted or uploaded in Pharmacy Access, but streamed in real time, on demand.
You have to actively sign up, that is opt-in, to Pharmacy Access, whereas the SCR is an opt-out scheme.
Signing up to Pharmacy Access will in no way affect any existing opt-outs that you may have in force for any or all of the NHS Databases. They will remain in force whether you sign up or not.
Is the Hampshire Health Record the same as the Summary Care Record ?
NO.
The Hampshire Health Record (HHR) and the Summary Care Record (SCR) are two entirely separate NHS Database projects.
The Summary Care Record is an example of a database that processes your data for primary medical uses only, that is for the provision of direct medical care by healthcare professionals.
The Hampshire Health Record is an example of a database that processes your data for both primary and secondary uses.
If you have already opted out of the SCR, you will have the read code 9Ndo in your GP record.
If your GP surgery runs EMIS software as its GP system (as The Oaklands Practice in Yateley does) then opting out of the SCR automatically opts you out of the HHR.
So you do not need to additionally opt out of the HHR, though you can do so if you wish.
But if your surgery does not run EMIS software, and instead runs software such as Vision, Synergy or SystemOne, then the SCR optout will not automatically opt you out of the HHR, and you will need to opt out separately as below.
If in doubt, opt out.
Opting-out of either database, or both, will not in any way affect the medical care that you receive from your GP surgery.
Is EMIS Web data streaming the same as the Summary Care Record ?
NO.
EMIS Web data streaming and the Summary Care Record (SCR) are two entirely separate data sharing schemes.
For further information about true, interoperable data streaming, including how to opt-out of it, please visit www.nhsdatasharing.info, or alternatively have a look at this example factsheet from North East Hampshire and Farnham.
EMIS Web data streaming, sometimes referred to as the MIG, involves information from your GP record being "streamed" in real time and on-demand, meaning that data from your GP record is neither extracted, nor uploaded, nor sent anywhere. The data remains within the surgery database and select organisations, such as your local Accident and Emergency department or GP out-of-hours centre, are only allowed to "view" it.
In contrast with the SCR, your GP surgery remains the data controller and so controls who has access to your information, and can monitor who has accessed your information.
If data streaming is available in your area, then:
Opting out of one will not automatically opt you out of the other.
Opting-out of either scheme, or both, will not in any way affect the medical care that you receive from your GP surgery.
Opting out of the Summary Care Record
What happens if I don't opt-out ?
If you do nothing, your GP will have to assume that you want a Summary Care Record.
Hopefully, you will just have a basic, core SCR.
I don't wish to have a Summary Care Record - how do I opt-out ?
Opting out of the Summary Care Record is quick and easy.
You are under no obligation whatosever to fill in the official opt-out form in order to prevent your data from being uploaded, though you can if you wish.
Your GP will either add the appropriate read code (9Ndo) to your GP-held records or your GP can set your decision to refuse to have a Summary Care Record directly via the surgery GP software (the so-called "Summary Care Record preference flag").
ANY communication(in person, by letter, email, fax, telephone or text) to your GP stating your wish to opt-out is valid.
I have created a generic opt-out form for use at any GP surgery:
This form will allow you to opt-out of all of the NHS Databases or just the Summary Care Record, as you wish.
Download the generic opt-out form in PDF format
Download the generic opt-out form in DOC format
You can opt-out in writing:
Do NOT send your opt-out form to your local CCG. The CCG is not the data controller for your medical records, your GP is.
You can opt-out verbally (without an opt-out form or letter) by:Do NOT ring, email or attend your local CCG to opt-out. The CCG is not the data controller for your medical records, your GP is.
You do not need:
How will opting-out affect my medical care ?
Healthcare professionals will treat you in exactly the same way, whether you have a Summary Care Record or not. Your entitlement to medical care is unaffected.
If medical staff are authorised to access your electronic hospital records (if any exist at a given hospital) then your opt-out of The Summary Care Record will have absolutely no effect on that whatsoever, in any way.
Opting-out will have no effect on your GP surgery and the way it provides services.
It will have absolutely no effect whatsoever on the way your GP records are stored or accessed electronically by your surgery.
It will not affect your prescriptions, vaccinations, screening procedures, investigations, monitoring of chronic conditions or referrals to specialists.
If you opt-out of The Summary Care Record, you can still be referred to a specialist under the NHS eReferral service, your surgery can still manage your prescriptions via the Electronic Prescription Service, you can continue to request your prescriptions online, continue to email your GP or surgery and continue to access your medical records online (if you are offered that facility).
Opting out of The Summary Care Record will have no effect whatsoever on your relationship with your GP surgery.
Will my GP mind if I opt-out ?
NO.
Whether or not you opt-out is immaterial to your GP.
And you certainly don't need your GP's approval or permission to opt-out of the Summary Care Record.
Other ways to share your GP information
When it comes to allowing healthcare professionals outside of your GP surgery access to information from your GP record, you have options:
You can have any combination of the above, opting out of any particular data sharing schemes, and/or opting in to any that you wish to.
You can find out about all of the NHS Databases, and other NHS data sharing schemes, via www.nhsdatasharing.info
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