Patient Data Opt out

Summary Care Record

In most cases the GP practice will only share data with other health and social care providers for direct care purposes with implied or explicit consent. However the NHS has systems in place for sharing of data for direct care and other so called secondary uses that go beyond direct patient care. These systems have been designed as “opt-out systems”. That is all NHS patients in England are opted into these national and local schemes but then patients have to opt out if they do not want their data to be used in this way.

Background

Data Sharing for Direct care

We share patients personal information on national (summary care record) and local data sharing platforms to create care records that would allow healthcare professionals to see information on our patient’s medical history if needed in direct care clinical situations with the consent of the patient  when possible. Even though these are direct care purposes, patients are able to opt out of such sharing

Data Sharing for Secondary Uses

Data is also shared with national organisations and data processors based on national guidelines and law.  This is for purposes that go beyond direct medical care that GP surgeries and other healthcare organisations provide patients. Secondary purposes include healthcare planning, audit, population analytics, research, and commissioning at a local, regional or national level. Often this will include patient identifiable data but sometimes may be anonymised aggregate data. Patients are able to opt out of secondary uses of their information

Summary care Records

The Summary Care Record (SCR) is an electronic record of important patient information, created from GP medical records. It can be seen and used by authorised staff in other areas of the health and care system involved in the patient's direct care. This would normally be in an urgent or emergency clinical situation. This is a national care record, and can be accessed across England if the situation arose. Certain parts of patient medical records will be shared within the NHS to provide effective care to patients outside their GP practice. This will enable health care professionals to have quicker access to information about any medicines or allergies/bad reactions a patient may have had. The summary care record will contain Name, Date of Birth, NHS number, repeat medications and allergies. Information can only be accessed by an NHS professional that holds an NHS smart card with a chip and passcode. People accessing information can only see parts that are relevant to their job. Health care staff will ask for a patient's permission every time they need to look at the summary care record. If the patient is unable to be asked, i.e. they are unconscious, the health care professional may look into the record if it is for the good of the patient but a note will be places in the medical records to show this. The SCR is run by NHS Digital. NHS Digital is the secure haven for NHS patient data, a single secure repository where data collected from all branches of the NHS is processed. NHS Digital provides reports on the performance of the NHS, statistical information, audits and patient outcomes as well as patient level clinical IT platforms. For more information about summary care, visit:

http://www.england.nhs.uk/learning-disabilities/improving-health/summary-care-records/

Patient information

If you are registered with a GP practice in England you will already have a Summary Care Record (SCR), unless you have previously chosen not to have one.  It will contain key information about the medicines you are taking, allergies you suffer from and any adverse reactions to medicines you have had in the past.

Information about your healthcare may not be routinely shared across different healthcare organisations and systems. You may need to be treated by health and care professionals that do not know your medical history. Essential details about your healthcare can be difficult to remember, particularly when you are unwell or have complex care needs.

Having a Summary Care Record can help by providing healthcare staff treating you with vital information from your health record. This will help the staff involved in your care make better and safer decisions about how best to treat you.

You have a choice

You have the choice of what information you would like to share and with whom. Authorised healthcare staff can only view your SCR with your permission. The information shared will solely be used for the benefit of your care.

Your options are outlined below; please indicate your choice on the form overleaf.

1. Express consent for medication, allergies and adverse reactions only. You wish to share information about medication, allergies and adverse reactions only.

2. Express consent for medication, allergies, adverse reactions and additional information. You wish to share information about medication, allergies and adverse reactions and further medical information that includes: Your significant illnesses and health problems, operations and vaccinations you have had in the past, how you would like to be treated (such as where you would prefer to receive care), what support you might need and who should be contacted for more information about you.

3. Express dissent for Summary Care Record (opt out). Select this option, if you DO NOT want any information shared with other healthcare professionals involved in your care.

Please note that it is not compulsory for you to complete this consent form. If you choose not to complete this form, a Summary Care Record containing information about your medication, allergies and adverse reactions and additional further medical information will be created for you as described in point b) above.

If you require any more information, please visit 

http://digital.nhs.uk/scr/patients

If you wish to opt out of summary care records, fill out the below form

The National Data Opt out (NDOO)

The NDOO is a mechanism by which individuals in England can control, to a limited degree, certain aspects of their confidential medical information and, in particular, what NHS Digital can do with it once in their possession.

The NDOO only applies to confidential information that is medical information that can identify you, for example by containing your name, DOB, address, NHS number etc. The NDOO is not limited to electronic data and so includes paper records.

And the NDOO only applies to uses of your confidential medical information for secondary purposes that are unrelated to, and beyond, the direct medical care that GP surgeries and other healthcare organisations provide you with when you are unwell, or to keep you well. Secondary purposes include healthcare planning, audit, population analytics, “risk stratification”, research, “commissioning”, commercial and even political uses.

Nearly always, you are not asked for your permission before your information is used in this way.

However you are able to opt out of such uses of your data. A Type 1 opt out stops data from your GP records going to NHS Digital for secondary uses. The NDOO (previously known as the Type 2 opt out) stops any other data held by other health and social care providers going to NHS digital. You may opt of either or both. However, if you want to maximise that chance of your data not being in anyway way apart from direct medical care you should do a Type 1 and NDOO opt out.

http://digital.nhs.uk/services/national-data-opt-out-programme

Type 1 Opt out

You can control your personal confidential information by expressing an objection, or opt-out, to your GP surgery, who will then add a special read-code, or electronic flag, to your GP record.

One such opt-out is known as a Type 1 opt-out (sometimes referred to as a 9Nu0 opt-out, after the flag added when expressed).

A Type 1 opt-out, when present in your GP record, should prevent identifiable information about you being extracted from your GP record, and uploaded to any other organisation, for purposes other than your direct care.

A Type 1 opt-out should then prohibit extraction and uploading for all of the following secondary uses:

• Risk stratification schemes (often run by your local CCG)
• National clinical audits (such as the National Diabetes Audit)
• The Clinical Practice Research Datalink (CPRD)
• Extraction of de-identified information about you concerning any eMed3 Statement of Fitness to Work reports (i.e. sick notes), uploaded to NHS Digital, and subsequently passed by the HSCIC to the Department of Work and Pensions
• All extractions and uploading of identifiable information about you to NHS Digital, for any secondary purpose (so-called GPES extractions)

A Type 1 secondary use objection will in no way affect how healthcare professionals provide you with direct medical care, or prevent them accessing your medical record if and when appropriate, and with your explicit consent.

Secondary uses are not about information sharing between healthcare professionals.

It 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

NDOO (previously called Type 2 Opt)

The national data opt-out enables patients to set or update their choice regarding how their confidential patient information is used for purposes of planning and research, except for certain circumstances.

The opt-out choice is set directly by the patient, either online or via a supported national telephone service without the involvement of the General Practice.

All type 2 objections will be converted to national data opt-outs from 25 May 2018 and any patient wanting to opt-out after this date should be directed to the national data opt-out.

Once an individual registers a national data opt-out, their confidential patient information may not be used the purposes of planning and research. Until a patient registers a national data opt-out their confidential patient information may be used for purposes of planning and research providing there is a legal basis to do so unless they have a type 1 objection in place in which case their GP data will not be used

A national data opt-out will not apply retrospectively, meaning it does not need to be applied to data that has already been processed. At the point a particular dataset has been used or released, all patients who have opted out at that time will be removed. Data does not need to be recalled once released or otherwise processed. A patient may choose to change their opt-out decision at any time and their current choice will be respected at any given time, replacing any previous choices made. If a patient has previously opted-out, but then subsequently withdraws their opt-out, their confidential patient information (including any historic data) will become available for use beyond their individual care once again. This is true even where the data relates to a period where the patient had previously opted-out.

If you wish to opt out of Secondary uses (NDOO) of information from health providers   you can do so at ‘Your NHS Data matters’ website where you can find out more about data sharing and set a national data opt-outs

http://www.nhs.uk/your-nhs-data-matters