PGGP – Guidance on how to Opt-out of NHS Data Sharing

The NHS is updating one of the ways that GP surgeries share patient data with it. This information will be used in medical research and planning of healthcare services to improve the health outcomes of all patients, as well as developing new and better treatment of illnesses. This data, comprising most of the computer coded record bits but not the story, letters or legally protected elements) will never be sold or used for marketing purposes if it goes through NHS Digital – it will only be used under tighter and more consistent controls than have been available before – and only for health and care improvement purposes.

The data that will be provided to NHS Digital is additionally protected before it leaves the GP Practice at the insistence of the GP profession. Details highly likely to identify you, such as NHS number, are replaced with unique codes which are produced by using special pseudonymisation software before the data is sent to NHS Digital. This extra protection is retained, and is only rarely removed by NHS Digital when needed for use by a successful applicant with the legal basis and approved purpose. The data is always used in the least identifiable ways possible, for a specified time only, and increasingly without release outside NHS Digital. Most data use for planning and research will be in a protected or fully anonymous form.

We believe the new process provides extra protections for patients, for the surgery – and very importantly will mean that your data can be safely used to plan better local and national services – a priority we need more that ever during and after the Covid pandemic. We are aware there has been some alarming and misleading publicity about this development, but are reassured that it is an opportunity to better protect your privacy, more tightly control the use, enable patients to more easily find out how their data is used for health benefit, while making more use confidentially of this data at a time of massive strain on the health service.

But we and the NHS understand that those with concerns may not want the NHS to use their data, irrespective of the benefits to the health service and the protections provided.

If you do not wish to allow your confidential patient information to be used for research and planning, you can register via National Data Opt on-line.

This is a preference that you can register at any time, or to reverse if you change your mind.

Some patients may wish to go further and prevent any of their information (even in protected state and through tighter controlled system) from leaving the Practice to go to NHS Digital. We respectfully remind them that the NHS depends on anonymised information in order to plan safer services and better treatments for patients. GP data has been used extensively in devising new vaccines & treatment priorities, for example for Covid-19. We therefore suggest reading this Transparency Notice on GP Data for Planning and Research before making a decision, which contains a link to a form requesting a ‘Type 1’ Opt-Out.

If you still wish to prevent sharing of your data to NHS Digital, please complete the ‘Type 1’ Opt-out form, please email your completed form to lamccg.paxtongreen.datacompliance@nhs.net. This will be respected by NHS Digital collection process.

This is a preference that you can register at any time, or to reverse if you change your mind.

If you want to know more about the purpose of collecting data, see the following link:
www.your-data-matters.service.nhs.uk/privacynotice

What is a medical/health record?

Wherever you visit an NHS service in England a record is created for you. This means medical information about you can be held in various places, including your GP practice, any hospital where you’ve had treatment, your dentist practice etc.
A health record (sometimes referred to as medical record) should contain all the clinical information about the care you received.
This is important so every healthcare professional involved at different stages of your care has access to your medical history, such as allergies, operations or tests. Based on this information, healthcare professionals can make judgements about your care going forward.

Paper and electronic records contain:

• treatments received or ongoing
• information about allergies
• your medicines
• any reactions to medications in the past
• any known long-term conditions, such as diabetes or asthma
• medical test results such as blood tests, allergy tests and other screenings
• any clinically relevant lifestyle information, such as smoking, alcohol or weight
• personal data, such as your age, name and address
• consultation notes, which your doctor takes during an appointment
• hospital admission records, including the reason you were admitted to hospital
• Hospital discharge records, which will include the results of treatment and whether any follow-up appointments or care are required
• X-rays
• Results of other tests and investigations

Access to Health Records governed by Data Protection Act (1998)

Some GPs have given online access to their patients’ GP records for some time. From April 25th 2015 all GPs have been expected to give their patients online access to summary information in their records. This is part of the drive to provide more GP online services to patients. It should give you more control of your health and well-being, especially if you are managing a condition that needs regular monitoring and frequent prescriptions.

• If you want to view medical records held by other NHS services you need to make a formal request under the Data Protection Act (1998) and apply in writing to the holder(s) of the records.
• If you wish to view your medical records online please sign up at Reception (you will need to provide photo ID)
• If you wish to see a paper version, please  write to your GP or the practice manager.
• If you want to see your hospital records, write to the hospital’s patient’s services manager or medical records officer.

If you think that information in your health records is incorrect or your need to update your personal details (name, address, phone number), please contact the practice in writing and let us know what needs changing.

We cannot change clinical records that have been previously recorded, although we can add supplementary comments if you wish to clarify statements that have been made (especially if you disagree with them).

London Care Record

This practice uses a shared record system called the London Care Record. The London Care Record is a secure view of your health and care information and lets health and care professionals involved in your care see important details about your health when and where they need them. Having a single, secure view of your information helps speed up communication between care professionals across London, improves the safety of care and can save lives.

London Care Record can only be lawfully looked at by staff who are directly involved in your care. Your information isn’t available to anyone who doesn’t need it to provide treatment, care and support to you. Your details are kept safe and won’t be made public, passed on to a third party who is not directly involved in your care, used for advertising or sold. For more information please read the London Care Record privacy notice for South East London at: SEL-ICS-Privacy-Notice-SEL-London-Care-Record-v1.0-updated.pdf (selondonics.org).

Opting out of the London Care Record

You have the right to object to your information being available through London Care Record. Although patients have the right to object and request restrictions on sharing their records, there may be instances where this request will not be upheld due to a clinical need as determined by the direct care giver. Please discuss this with your GP/ health and social care worker and you can find further information in this London Care Record leaflet.

For further information and advice about data protection or your right to object to sharing your data you can contact the team at Lewisham and Greenwich Trust who manage the London Care Record for South East London www.lewishamandgreenwich.nhs.uk/london-care-record or you can call 020 3192 6011 and leave your name and number for someone to contact you.

If you have already requested to stop sharing on ConnectCare/Local Care Record in South East London, then you will not have to request this again for London Care Record.

Summary Care Record

2. Summary Care Record

This is sharing your data within the NHS. e.g if you are seen in A&E.

If you are registered with a GP practice in England, you will have a Summary Care Record (SCR) unless you have chosen not to have one.

Your SCR contains the following basic information:

• the medicines you are taking
• your allergies
• bad reactions you may have to certain medicines

It also includes your name, address, date of birth and unique NHS Number which helps to identify you correctly.

You can choose to add any information to your SCR that you think will help improve your care. This can be of particular benefit to patients with detailed and complex health problems. You and/or your carer should discuss anything you wish to add with your GP.

If you are a parent or guardian of a child under 16 and feel that your child is able to understand this information you should show it to them. You can then support them in the decision to maintain an SCR and whether to include additional information.

Who can access or view my SCR?

Only authorised healthcare professionals directly involved in your care can access your SCR. Your SCR will not be used for any other purposes.

The person viewing your SCR:

• needs to have an NHS Smartcard with a chip and passcode
• will only see the information they need to do their job
• will have their details recorded every time they look at your record

In addition, the healthcare professional must seek your permission if they need to look at your SCR. If they cannot ask you because you are unconscious or otherwise unable to communicate, they may decide to look at your record because doing so is in your best interest. This access is recorded and checked by the Privacy Officer of the organisation to ensure it is appropriate.

You can contact this number for more information 0300 123 3020
Summary Care Record opt out form

Please complete this form and return to the practice.

Please note. Opting out of one does not imply you have opted out of both. You must complete both forms if you wish to opt out of both.

You can opt back into SCR at any time, just put your request in writing.