Controlling your medical records – Opting out of Data Sharing (also known as Type 1 opt-outs)

From 1st July 2021, GP practices nationwide will be required to supply patients’ personal and confidential medical information, on a regular and continuous basis, to NHS Digital, a project known as GPDPR.

There has been some reports of misinformation circulating around the ‘selling’ of patient data, and this, released by NHS England, may be helpful:-

https://digital.nhs.uk/services/national-data-opt-out/mythbusting-social-media-posts

The bare facts of the information contained in the above link are:-

You can opt out at any time - there is no deadline
We only share data to improve health and care
Health and care data helps the NHS respond to emergencies like the coronavirus outbreak
There are lots of protections in place to make sure patient data is used securely and safely

We do not sell health and care data
We do not share data with marketing and insurance companies

Under the Health and Social Care Act 2012, GP practices have no choice but to allow NHS Digital to extract this information – it is a legal obligation. The information will consist of your full (historic) GP record, as well as new information added to it on an ongoing basis. NHS Digital will become the data controller for that information, will administer the data, and intends to use it for planning health services, commissioning, population health management and for research. This is known as secondary uses of your medical records.

Medical staff treating you in GP surgeries, hospitals, A&E and out-of-hours centres will not use, or be able to use, this database. They have access to all relevant medical information about you in other ways.

Although GP practices cannot object to this information leaving the practice, individual patients and their families can instruct their practice to prohibit the transfer of their personal data, i.e. you have the right to opt-out.

Opting out of GPDPR involves registering an objection at the surgery to all secondary uses of your personal identifiable data, where your explicit consent is not being sought beforehand. This is known as a Type 1 opt-out. You have the right to control how medical information about you is shared, disseminated or sold, for purposes other than your direct medical care – so called secondary uses (or purposes).

Secondary uses include projects involved in risk stratification, “population health

management”, national clinical audits, research, healthcare planning, commissioning

of healthcare services by CCGs, commercial and even political uses.

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. When present in your GP record, the special read code 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.

This opt out should then prohibit extraction and uploading for all of the following secondary uses:

General Practice Data for Planning and Research (GPDPR) extraction

• Risk stratification schemes

• National clinical audits (such as the National Diabetes Audit)

• 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 NHS Digital 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 from accessing your medical

record if and when appropriate, and with your explicit consent. The Opt Out form is available below, or via the surgery.

You will still need to opt out to prevent secondary processing even if you have already opted out of The Summary Care Record.

You can also express a National Data Opt Out (NDOO) as well and with both the Type 1 and National Data opt-outs in force:

• No record-level information whatsoever will be uploaded from your GP record to

NHS Digital

• NHS Digital will have no information from your GP record to release, in any format,

to any organisation, for any purpose

• NHS Digital will only continue to hold information extracted from your hospital

records, as well as aggregate information (i.e. numbers) from your GP practice

• NHS Digital will not be able to release any information that clearly identifies you

from the information extracted from your hospital records

However, the surgery cannot do the National Data Opt Out for you – this must be done either by accessing the website here:-

Make your choice about sharing data from your health records - NHS (www.nhs.uk)

Or, if you don’t have internet access, you can phone NHS digital on: 0300 303 5678.

We hope that this information is helpful to you to make an informed decision.

(see below the opt out form)

TYPE 1 OPT OUT FORM – MEDICAL RECORDS

Dear Helston Medical Centre and Porthleven Surgery,

I do not wish to allow my medical records to be used for any purpose other than my medical care.

Please ensure my dissent to secondary uses is recorded which includes adding the following code to my GP record:

Type 1 objection:

dissent from secondary use of GP patient identifiable data XaZ89

I understand that I can opt back in to any or all of these at any time in the future.

Name:……………………………………………………………………………… DoB:………………….

(please print in capital letters)

Signature:……………………………………………………………………….. Dated ………………