The Summary Care Record



This non-commercial website represents the personal views of Dr Neil Bhatia, GP and Caldicott Guardian for the Oaklands Practice in Yateley.


Page 1 - The basics


This website aims to provide information to everyone about The Summary Care Record (SCR) so that you can make an informed decision about opting-in or opting-out.

Much of the information and guidance on this site was extracted from sources via the Freedom of Information Act.

The information provided on this site is designed to complement, not replace, any guidance or opinion about The Summary Care Record provided by your own GP surgery.

The official DoH Summary Care Records website is here.


You can control your GP records - if you know how.

See this chart (tinyurl.com/mygprecords) for guidance, and contact your GP surgery if you need further information about any of the data flows.


Summary Care Records in a nutshell....




The details....


Summary Care Records - what is going to happen ?

You may have received a letter from your local CCG (or, previously, PCT) about the Summary Care Record (it looks like this).

A new central NHS computer system is being gradually introduced across England called the Summary Care Record (often referred to as the "NHS Database"). The Summary Care Record is meant to help emergency doctors and nurses help you when you contact or see them when your GP surgery is closed.

Medical data from your GP records will be extracted and uploaded, on a continuous basis, to a central database run by the Department of Health (DoH). 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 will be uploaded by default, unless you actively object – an "opt-out" mechanism:.

That is, if you do and say nothing, your data will be uploaded.

The DoH believes that everyone should be assumed to be happy to have their information uploaded and be required to formally object if not.


When is this all happening ?

The Summary Care Record is an ongoing project. It is live in some areas of the country, and within those areas in some (but not all) GP surgeries.

In November 2013, the government announced that all surgeries in England must upload Summary Care Records by then end of March 2015, at the latest.

However, your GP surgery may not yet be able to tell you exactly when they will commence uploading Summary care Records.


Can GP surgeries refuse to upload records to the Summary Care Record without their patients' explicit consent ?

NO.

The Department of Health is forcing all GP surgeries to upload Summary Care Records, under an opt-out system, by the end of March 2015.


Who will be the data controller for my uploaded records ?

The data extracted for the Summary Care Record will be stored on Deparment of Health national servers and not on GP systems.

The Secretary of State for Health is the data controller for all data stored in Summary Care Records.

As the data controller, he and he 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. He 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:


What information will be extracted from my medical records ?

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 either opted-in, or 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.

The Summary Care Record was never - ever - going to be just a "summary".

Immediately after this initial upload further data can and will be added, such as major diagnoses, past operations and procedures, hospital letters etc. This process of uploading further data to your record is known as "enrichment" or "enhancement".

Additional (or "supplementary") data from your GP record can be uploaded to the Summary Care Record. This will then result in an enriched GP Summary.

The additional data that can be uploaded to the Summary Care Record by your GP is vast.
The GP Summary can hold data under some or all of the following headings:

Since October 2010, the government has stated that patients must give their explicit consent before any enrichment by their GP occurs.

If you are asked by your GP before further information about you is uploaded, then you can request that the information is not sent. You may wish for sensitive information, for example relating to mental or sexual health or certain infections, to be witheld from your enriched Summary Care Record.

Following the recommendations made in the Ministerial Review of the Summary Care Record, which reported in October 2010, the only enrichment of the Summary Care Record will be with additional information added from your GP records.

No other organisations (e.g. hospital trusts, A&E) are now permitted to upload additional information to the Summary Care Record.


How do I control enrichment of my Summary Care Record ?

There exists a setting or flag 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 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.


If you have opted-out, then no Summary Care Record (or actually, a blank one) will be created for you. Obviously, no enrichment can take place by your GP. Your GP will have added the opt-out read codes 93C3 or 9Ndo to your GP record, or may have set the flag directly. Setting the flag adds the read code and vice versa.

The SCR Preference flag is set as Express dissent (opted out) - Patient does not want to have a Summary Care Record


The remaining settings determine whether GP enrichment can take place or not.

The default setting is implied consent for a core SCR. 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 may remain on this setting. It is the assumption made if you do not opt-out.

The SCR Preference flag is set as Implied consent for medication, allergies and adverse reactions only

The other setting that prevents enrichment is express consent for a core SCR. Whilst this setting remains in force, again only a core GP summary will be uploaded and your SCR cannot be enriched by your GP.

This is set if you tell your GP that you only want a core SCR.

The SCR Preference flag is set as Express consent for medication, allergies and adverse reactions only


The final setting is express consent for an enriched SCR.

This is set if you tell your GP that you acually want an enriched SCR.

The SCR Preference flag is set as Express consent for medication, allergies and adverse reactions, AND additional information

If this setting is set then:

Express consent to have an enriched SCR can be set in a number of ways:

Be aware of the implications of having an enriched Summary Care Record.


So what are my choices if I want to have a Summary Care Record ?

If you want a Summary Care Record (SCR) then you need to decide whether you want your SCR limited to basic core data (allergies, medications and bad reactions) only, automatically updated from your GP surgery, or whether you want your SCR to be enriched with further data from your GP record.

If you 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 :

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.


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 flag, or add the 9Ndn read code to your records.


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.

Be aware however that this procedure will not delete your previously uploaded, enriched data.


What about my children's records ?

The Department of Health 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 find it virtually impossible 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.

If your Summary Care Record has ever been accessed by a health professional (GP, Nurse, A&E doctor, Medical Student, Pharmacist, Health care Assistant, Phelbotomist, Optician, Dentist etc. etc.), or "should have been accessed" then you cannot get your data deleted, only "masked".

If you present to A&E and you are asked if your SCR can be looked at, and you say no (perhaps because this is the first time that you realise that your data has been uploaded) then your data "should have been accessed" and you cannot get your data deleted.

The Department of Health has produced no guidance to indicate when a SCR "should have been accessed".

Nevertheless, if you want to try to get a SCR deleted:

Very,few requests to have a SCR deleted will be accepted.


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.


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.

Be absolutely sure that your "permission to view" status (otherwise known as your SCR consent value) remains permanently at Patient must be asked every time for permission to view their Summary Care Record.

Just one mouse-click by the doctor or nurse looking at your SCR can change this consent status to Patient need not be asked again for permission to view their Summary Care Record.

And then you won't be asked for your permission ever again.


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.

You will have to apply to the Department of Health for this information, under a DPA subject access request.

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.

The from that you need to use to make your request is available here.

You will provide your name, date of birth, current address and possibly your previous address.

You will need to provide for identity purposes a copy of any one of the following documents:

You will need to send your request to:

The Data Protection Manager
Department of Health
Room 334B Skipton House
80 London Road
London SE1 6LH

It may take up to 40 days for your requested information to be received from the DoH.


Who has access to my Summary Care Record ?

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 NHSnet 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.

Almost any department or ward within a hospital, and any staff member within those areas, can be authorised to access your Summary Care Record, including managers, support workers, helpers and technicians.

Soon, even pharmacies across England could have access, which you may or may not welcome.

Your GP does not authorise them - CCGs, hospital trusts and organisations do. Your GP cannot stop those activity codes being added to any smartcard.

In order to view a Summary Care Record, the user has to declare that they have a reason to access the record - that is, that they have a "Legitimate Relationship" with the patient.

When your Summary Care Record is accessed, the user is asked to declare the "self-claiming" Legitimate Relationship via a mouse-click. They then have access to your record.

The SCR is supposedly policed by means of "privacy alerts", sent to an organisation's privacy officer when, for example, a self-claiming legitimate relationship is generated. The privacy officer is then supposed to investigate all such alerts to see whether any unwarranted access to the SCR has occurred.

When a legitimate relationship is set up (by a receptionist) for an entire department - for example, when you attend Accident & Emergency - then everyone in that department (who has an appropriate smartcard) can access your record without needing to self-claim. They all then have unrestricted access to your Summary Care Record for the next 6 months. No one needs to declare a "self-claiming" Legitimate Relationship - and that means no privacy alerts.

However, the privacy officer policing your Summary Care Record will not be your GP.


Will my Summary Care Record be downloaded when viewed - and will this download be deleted ?

When your SCR is looked at in an Accident & Emergency department (or other hospital department running the Ascribe Symphony software) a copy of your SCR (as it is at that moment in time, a snapshot) is downloaded and stored indefinitely on the organisation's local computer system.

You cannot prevent this download nor can you get this downloaded copy deleted should you wish.

However, when you visit a GP out of hours centre, the majority of which run software by Adastra, a snapshot of your SCR is not downloaded and stored indefinitely.

A copy of the SCR is temporarily cached on the Adastra system when a clinician accesses the SCR so it can be viewed by them. This copy is automatically deleted by the system once the case has been closed.


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 is very, very low at present.

Very few organisations across England are actually set up to access and use the Summary Care Record.

Many hospital trusts neither use the Summary Care Record nor have plans to.

In some hospital trusts, the Accident & Emergency department isn't set up to use the Summary Care Record, although other departments are. And within those departments, doctors are not enabled to access the Summary Care Record.

Even in those GP out of hours centres set up to use the Summary Care Record, official figures have shown that in areas where records have been uploaded, they are accessed for less than 1% of calls.

A current (5th November 2013) list of organisations who are capable of viewing the SCR can be found here, although it is not clear which departments (such as Accident & Emergency) within those hospital trusts are actually and reliably looking at Summary Care Records.

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.

If not, you may wish to wait until they are before allowing your records to be uploaded. The upload serves no purpose otherwise.


In North East Hampshire, not one of the four local Accident and Emergency departments ( Frimley, Reading, Basingstoke and Guildford ) are either viewing Summary Care Records or, seemingly, have any plans to do so at present.



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.



Is care.data the same as the Summary Care Record ?

NO.

care.data and the Summary Care Record (SCR) are two entirely separate projects.

For further information about care.data, please see my other site.

As regards the Summary Care Record:

care.data is very different to the Summary Care Record:

You will still need to opt-out to prevent a Summary Care Record upload even if you have already opted-out of care.data .

Summary Care Record opt-outs will not prevent care.data uploads.

care.data opt-outs will not prevent Summary Care Record uploads.

Opting-out of one database does not mean that you have automatically opted-out of the other.


Can I have a Summary Care Record but opt-out of care.data ?

YES.


Can I agree to care.data extraction but opt-out of the Summary Care Record ?

YES.


Opting-out of either database, or both, will not in any way affect the medical care that you receive from your GP surgery.



What happens if I neither opt-in nor 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 (though that is by no means certain).

Unless your surgery clearly states that it will automatically create only basic, core SCRs, then you should opt-in and make your preference known to your GP.


So if I am happy to have a Summary Care Record, how do I opt-in ?

If you are certain that you want a Summary Care Record (if you are unsure then please discuss it with your GP) then you can opt-in by giving your explicit consent to your GP.

If you are certain that you would like your data uploaded then you simply have to state this to your GP. You can see your GP, ring your GP or write to your GP. If your GP allows you to email him/her then you could give your explicit consent in this way.

You have the right to see a copy of your medical data before it is uploaded by your GP surgery to the Summary Care Record.

This will allow you to check the following:

before the information is uploaded.


If you do wish to have a Summary Care Record, make sure:


I have created a simple opt-in form for use at any GP surgery:

Download the generic opt-in form in PDF format

Download the generic opt-in form in DOC format

Download the generic opt-in form in RTF format

Please note that this form states that you want a basic SCR, with core data only uploaded.


You can opt-in using this simple form:

Do NOT send your opt-in form to your local CCG. The CCG is not the data controller for your medical records, your GP is.

You can opt-in verbally (without an opt-in form or letter) by:

ANY communication (in person, by letter, email, fax, or telephone) to your GP stating your wish to opt-in is valid.



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 do not have to wait until the Summary Care Record goes live in your area to opt-out. You can opt-out right now and your wishes will be recorded by your GP and will ensure that your data is not uploaded if and when the programme does go live for your surgery.

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.

And when the Summary Care Record does go live in your area and for your surgery, you will not have to opt-out a second time.

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:

Download the generic opt-out form in PDF format

Download the generic opt-out form in DOC format

Download the generic opt-out form in RTF 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 ?

Opting-out will have no effect on the medical care that you receive either from your GP surgery or from anywhere else within the NHS or private sector.

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 Choose & Book, 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.


Feel free to send me constructive comments about this site.

Neil.Bhatia@nhs.net

I will read every comment sent, though please do not be offended if I do not reply to your message.

Privacy policy: I will not sell, trade or otherwise transfer to any third parties your personally identifiable information (your email address or the content of your email)


This non-commercial website represents the personal views of Dr Neil Bhatia, GP and Caldicott Guardian for the Oaklands Practice in Yateley.

Last updated: 01.12.13


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