Increasingly, patient medical data is shared e.g. between GP surgeries and District Nursing, in order to give clinicians access to the most up to date information when attending patients.
The systems we operate require that any sharing of medical information is consented to by patients beforehand. Patients must consent to sharing of the data held by a health provider out to other health providers and must also consent to which of the other providers can access their data.
e.g. it may be necessary to share data held in GP practices with district nurses but the local podiatry department would not need to see it to undertake their work. In this case, patients would allow the surgery to share their data, they would allow the district nurses to access it but they would not allow access by the podiatry department. In this way access to patient data is under patients' control and can be shared on a 'need to know' basis.
The national data opt-out service was introduced on 25 May 2018 following recommendations by the National Data Guardian who in her independent review of data security, consent and opt-outs (2016) said: 'A patient should be able to state their preference once (online or in person), confident in the knowledge that this will be applied across the health and social care system.'
The Patient Data Choices Project is a collaboration between NHS Digital and the Royal College of General Practitioners and has delivered a series of events and portfolio of resources to inform primary care teams on the national data opt-out so that they can confidently and accurately advise patients and carers on their data sharing options, and to support primary care teams to uphold the national data opt-out within their own practice.
People will be able to set an opt-out online, through a supported telephone service (like the eReferral service) or by submitting a paper request
Children under 13 and those who lack capacity may not be able to set an opt-out themselves. In such cases individuals who have a formal, legal relationship to act on behalf of the patient (i.e. somebody who has parental responsibility, a legal power of attorney or court appointed deputy) will be able to set a proxy opt-out on their behalf. This is to enable equality of opportunity for everyone to be able to opt out and will also reduce the burden on GP practices
The national data opt-out choice is set by the individual and does not require any action by the person’s General Practice
Detail
Routes to set an opt-out - online
The preferred route for people to set a national data opt-out preference is through the nhs.uk website, which has information about the national data opt-out to help people make an informed choice. To set an opt-out online, the individual is required to verify their identity by providing their name, date of birth, NHS number or postcode. They will then be presented with their mobile phone number and/or email from the Patient Demographic Service (PDS) so that a secure one-time password can be sent to them. This ensures the patient is in control of the process.
If a person cannot confirm their identity they can use the telephone service to guide them through the service or set a choice on their behalf. The website is available 24 hours a day, seven days a week, from 25 May 2018.
Routes to set an opt-out - Supported telephone service
People can set their national data opt-out choice using a telephone service on 0300 303 5678. When calling this service patients will need to confirm their identity by providing their NHS number, name and date of birth. If the patient does not know their NHS number the contact centre may ask for their postcode to confirm a match. The patient will also need to have an email or mobile phone number recorded on PDS to receive a verification passcode.
Calls to this number should cost no more than calls to a normal personal or business geographic landline number (numbers starting with 01 or 02), whether calling from a landline, or mobile phone.
The telephone service is available 9am to 5pm, Monday to Friday, excluding English bank/ public holidays.
Routes to set an opt-out – Non-digital (Paper)
Patients can also obtain a form to fill in and post to register a national data opt-out preference. The form can be obtained via the nhs.uk website or the national telephone service. To use the non-digital route a patient can either use their NHS number, or two forms of identification one to confirm name and the other to confirm address. When a patient updates their choices through the non-digital paper route they will receive confirmation, and can choose to receive this by letter or email.
Cannot be set via GP
The national data opt-out choice CANNOT be set by the GP or other member of the practice staff and is not stored or implemented through the use of codes in the GP system. National data opt-outs are held by NHS Digital on a central repository on the Spine.
In order to ensure that identifiable data for patients with a restricted access setting against their PDS record (also known as a Sensitive flag) is not released for secondary purposes, a national data opt-out has been set for all patients with such a restricted access setting. The process for setting this flag on PDS has been updated so that a national data opt-out can be set or un-set as part of this process. See the ‘Restricting access to a patient’s demographic record’ section below.
Children and People with Lasting Power of Attorney
Patients can set their national data opt-out choice from the age of 13 through any of the available routes. This age is based on the minimum age in data protection legislation and is not based on any assessment of competence. Any national data opt-out set by a parent or guardian prior to age 13 will remain in place unless and until the patient reviews and changes it.
For children under the age of 13 a national data opt-out can be recorded by someone with parental responsibility. Once a young person passes the age of 13 the person with parental responsibility will no longer be able to set a national data opt-out.
Someone with legal authority to act on behalf of an individual e.g. Lasting Power of Attorney (LPA) or court appointed deputy can set a national data opt-out choice on behalf of that individual. For example a daughter with LPA could set a choice for her elderly parent with dementia. Anyone who wishes to set a national data opt-out on behalf of someone else will need to use the ‘by post’ forms or speak to the telephone service.
To set an opt-out on behalf of someone else, they will need to supply their own name, address, postcode and a signed declaration of parental responsibility to act on behalf of the individual for whom they are setting a choice. They will also need either the name and NHS number for the person for whom they are setting the choice, or name and two identification documents (one for name and one for address).
There is a new Central NHS Computer System called the Summary Care Record (SCR). The Summary Care Record is meant to help emergency doctors and nurses help you when you contact them when the surgery is closed. Initially, it will contain just your medications and allergies.
Later on as the central NHS computer system develops, (known as the ‘Summary Care Record’ – SCR), other staff who work in the NHS will be able to access it along with information from hospitals, out of hours services, and specialists letters that may be added as well.
Your information will be extracted from practices such as ours and held on central NHS databases.
As with all new systems there are pros and cons to think about. When you speak to an emergency doctor you might overlook something that is important and if they have access to your medical record it might avoid mistakes or problems, although even then, you should be asked to give your consent each time a member of NHS Staff wishes to access your record, unless you are medically unable to do so.
On the other hand, you may have strong views about sharing your personal information and wish to keep your information at the level of this practice. Connecting for Health (CfH), the government agency responsible for the Summary Care Record have agreed with doctors’ leaders that new patients registering with this practice should be able to decide whether or not their information is uploaded to the Central NHS Computer System.
For existing patients it is different in that it is assumed that you want your record uploaded to the Central NHS Computer System unless you actively opt out.
The Great North Care Record is a way of sharing patient information with health and care staff. It covers the 3.6 million people living in the North East and North Cumbria.
It means information recorded about your health such as illnesses, hospital admissions and treatments can be accessed by different people who are involved in your care. Previously, different hospitals, GPs and other health workers record separate pieces of information about you, which wasn’t easily shared.
By sharing this information with the Great North Care Record, health and care workers can access the most current details about you 24/7. This can help them make choices about your care, as they know more about you.
This animation explains more about how the Great North Care Record works.
Benefits of sharing your care records
The Great North Care Record allows health and care staff to see a more complete picture of your medical history. It includes vital information such as allergies, medication, test results, and any interventions you may be receiving, or have had in the past.
When staff are more informed, it helps them to make the right decisions quickly, providing better, safer care. This is especially important during emergency situations or out of normal working hours. Only staff involved in your care, and who have a legitimate reason are allowed to view your records via the Great North Care Record.
It is your choice to be part of the Great North Care Record. Everyone living in the North East and North Cumbria is automatically opted-in to their medical record being accessible via the Great North Care Record, unless they have previously opted out of sharing GP records.
If you are happy for your records to be available, you don’t need to take any action.
What is The Great North Care Record programme?
The Great North Care Record programme is a collaboration of all NHS organisations, Local Authorities and Universities across the North East and North Cumbria. We provide an integrated care record for the 3.6million people living in the region.
The Great North Care Record is governed by the North East and North Cumbria Integrated Care System (ICS) Management Group which is made up of Chief Executives of NHS hospitals, primary care and local authorities. Find out more about them and how they are managed.
How your information is protected
By law, everyone working in, or on behalf of the NHS and social care, must respect your privacy and keep all information about you safe. The Great North Care Record uses a secure system that meets NHS and social care security standards. The system keeps an audit trail including the time and date when your record is accessed. If you have access to your patient record through a GP app you will be able to see this information. You can also contact their helpline on 0344 811 9587 or email and they can check. The laws on data protection are clear and they take them very seriously. Organisations who use the Great North Care Record are responsible for ensuring only the right people access your record and have strict policies and protocols in place to prevent inappropriate access.
How to opt out
If you want to opt out of the Great North Care Record, you can speak to our helpline team on 0344 811 9587, email them so they can do this for you, or complete this online form. The helpline is open Monday to Friday 9am – 5pm. You can also speak to the helpline if you have any questions.
However, we want anyone who does opt out, to understand that it could negatively impact the care the NHS and adult social care services can provide. If health and care staff can’t access your medical record:
It might mean that tests or investigations are repeated because results from other organisations can’t be accessed.
You may need to repeat the same information to different staff.
The staff treating you won’t be able to see what has happened to you in different parts of the NHS. They will only be able to see the record in their organisation such as that particular hospital or GP practice.
They might not know what medication you are taking.
It may delay treatment.
It will not stop health and care staff contacting one another to ask questions about your history.
You may not be conscious or able to share details about your medical history if you arrive at hospital.
If you choose to opt out, you are only opting out electronic sharing of your medical record through the Great North Care Record. There are other information sharing projects out there such as the Summary Care Record. As these are all operated and managed separately, you need to opt out of each one individually.
If you want to be removed from the Great North Care Record, contact the helpline on 0344 811 9587. You will need to provide us with your name, date of birth and NHS Number so we can opt you out. You can complete this postal opt out form if you would prefer.
