Patient Data and sharing of Data with other Organisations

Data Protection Privacy Notice for Portcullis Patients (amended 27.7.2021)

Sharing Your Information with other health and social care organisations

You can decide how your personal information is used across the NHS and other health and social care organisations in 3 different ways.

RECORD 1. Summary Care Record (SCR)

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 who 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.

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. The default core Summary Care Records is created for you with the following basic information but you can choose to share additional information if you wish or opt out of sharing any information.  You are free to change your decision at any time by informing your GP practice.

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 attached.

A. Basic SCR – This is the core SCR created unless you opt out. Express consent for medication, allergies and adverse reactions only. You wish to share information about medication, allergies for adverse reactions only.

B. Enriched SCR – Express consent for medication, allergies, adverse reactions and additional information. You wish to share information about medication, allergies for adverse reactions and further medical information that includes: your 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.

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

RECORD 2. One Health and Care Local Integrated Care Record – Staffordshire and Stoke on Trent One Health and Care is a confidential digital shared care record for people living in Staffordshire and Stoke-on-Trent.

This is a local initiative which brings data together from the different organisations involved in health and social care and allows doctors, nurses and other health and social care professionals directly involved in patient/client care to see relevant information in order to provide better, safer care. When a patient/client visits any of the organisations listed below, or use services provided by them, staff directly involved in your care will have access to the important information from health and social care records.
• Staffordshire and Stoke-on-Trent GP practices
• University Hospitals of North Midlands NHS Trust (Royal Stoke)
• University Hospitals of Derby and Burton NHS Foundation Trust
• Midlands Partnership NHS Foundation Trust
• North Staffordshire Combined Healthcare NHS Trust
• Staffordshire County Council (Social Care)
• Stoke-on-Trent City Council (Social Care)
• Continuing Healthcare services
• West Midlands Ambulance Service

The information that the staff directly involved in patient care will be able to view is listed below:
• Name, date of birth, sex, address, telephone number, NHS number
• The name of their GP practice and GP
• Medications, allergies, ongoing and historic conditions, immunisations and diagnoses
• Test results, hospital referrals, admissions, discharges and clinics attended
• Social and mental health information and care plans

Information will be held securely and only shared with staff members in the partnership organisations who are directly involved in your care and support. All staff are bound by professional confidentiality. Sensitive information such as attendance at sexual health clinics, fertility treatment records, and records relating to gender reassignment will not be included. You have the choice to opt out of this service if you wish. If you opt out your health and care information will not be visible to One Health and Care users, just a statement to show you have dissented and your name, Date of Birth and NHS Number.

If you wish to have this record, you do not have to do anything. One will be created for organisations listed above to see.

If you choose to opt out of the Summary Care Record (SCR) in item 1C, you will automatically be opted out of the One Health and Care. You can change your mind and opt back in at any time by
contacting your GP practice.

Please consider carefully before opting out as it could mean that vital information about you is not immediately available when you require health or social care support. If you do choose to opt out, your information will continue to be shared by the listed organisations by phone, email and on paper where required as part of your direct care.

RECORD 3. NHS Digital record
NHS Digital uses and shares personal information to help research new treatments, plan where to put local clinics and the number of Drs and nurses to have at your local hospital. If you DO NOT wish your information to be used for these purposes, you need to opt out by contacting NHS Digital on visit nhs.uk/your-nhs-data-matters or call 0300 303 5678 . Your GP surgery cannot do this for you. You can also opt out on the NHS app.

HOW CAN I OPT IN OR OPT OUT?

If after reading all the information below you choose to opt in or out of one or all three types of records you need to do as follows

OPT IN

• Basic SCR (Record 1A) -no need to opt in it will be created automatically

• Enriched SCR-please fill in the form below and send to the practice

• One Health and Care Local Integrated Care Record (RECORD 2)-no need to opt in it will be created automatically

• NHS digital record (RECORD 3)-no need to opt in it will be created automatically

OPT OUT

• Basic SCR (Record 1A) -please fill in the form below and send to the practice

• Enriched SCR-please fill in the form below and send to the practice

• One Health and Care Local Integrated Care Record (RECORD 2)-please fill in the form below and send to the practice

• NHS digital record (RECORD 3)-you need to opt out by contacting NHS Digital on visit nhs.uk/your-nhs-data-matters or call 0300 303 5678 . Your GP surgery cannot do this for you. You can also opt out on the NHS app.

FORM TO OPT IN OR OUT

You can fill in the website return form below or download the form attached and send to our email portcullis.surgery@nhs.net or opt out of NHS Digital by visiting nhs.uk/your-nhs-data-matters or call 0300 303 5678 .

Sharing Care Records Information and Opt Out Form – v1.0 (1)

Why can sharing data with other organisations be helpful?

There are advantages of sharing information with other organisations.

• These records help to provide you with the best possible healthcare.

To ensure you receive the best possible care, your records are used to facilitate the care you receive, including contacting you. Information held about you may be used to help protect the health of the public and to help us manage the NHS and the services we provide. Information may be used within the GP practice for clinical audit to monitor the quality of the service provided.

• Risk Stratification

Information about you can be collected from several sources including NHS Trusts and from this GP Practice. A risk score is then arrived at through an analysis of your de-identified information is only provided back to your GP as data controller in an identifiable form. Risk stratification enables your GP to focus on preventing ill health and not just the treatment of sickness. If necessary, your GP may be able to offer you additional services. Please note that you have the right to opt out of your data being used in this way.

“Information from care records may be used to identify individual patients from the risk stratified data when it is necessary to discuss the outcome and consider preventative care. Risk stratified information specifically relating to children and young people’s asthma is shared with specialist children’s Asthma care providers in Shropshire Community Healthcare Trust and Shropshire and Telford Hospitals to enhance the delivery of our services”

• Medicines Management

The Practice may conduct Medicines Management Reviews of medications prescribed to its patients. This service performs a review of prescribed medications to ensure patients receive the most appropriate, up to date and cost-effective treatments.

• Patient Communication

The Practice will use like to use your name, contact details and email address to inform you of NHS services, or provide inform about your health/information to manage your healthcare or information about the management of the NHS service. There may be occasions were authorised research facilities would like you to take part in research in regard to your particular health issues, to try improve your health, your contact details may be used to invite you to receive further information about such research opportunities.

• Safeguarding

The Practice is dedicated to ensuring that the principles and duties of safeguarding adults and children are holistically, consistently and conscientiously applied with the wellbeing of all, at the heart of what we do.

Our legal basis for processing For the General Data Protection Regulation (GDPR) purposes is: –

Article 6(1)(e) ‘…exercise of official authority…’.

For the processing of special categories data, the basis is: –

Article 9(2)(b) – ‘processing is necessary for the purposes of carrying out the obligations and exercising specific rights of the controller or of the data subject in the field of employment and social security and social protection law…’

• Research

Clinical Practice Research Datalink (CPRD) collects de-identified patient data from a network of GP practices across the UK. Primary care data are linked to a range of other health related data to provide a longitudinal, representative UK population health dataset. You can opt out of your information being used for research purposes at any time, full details can be found here: –

https://cprd.com/transparency-information

The legal bases for processing this information for research purposes.

NHS Digital (formally the Health and Social Care Centre) may process ‘personal data’ for us as an accredited ‘safe haven’ or ‘trusted third-party’ within the NHS when linking GP data with data from other sources. The legal bases for processing this data are:

• Medicines and medical device monitoring: Article 6(e) and Article 9(2)(i) – public interest in the area of public health
• Medical research and statistics: Article 6(e) and Article 9(2)(j) – public interest and scientific research purposes

Any data CPRD hold or pass on to bona fide researchers, except for clinical research studies, will have been anonymised in accordance with the Information Commissioner’s Office Anonymisation Code of Practice. We will hold data indefinitely for the benefit of future research, but studies will normally only hold the data we release to them for twelve months.

Additional information about your data

This privacy notice lets you know what happens to any personal data that you give to us, or any that we may collect from or about you.

This Notice explains

• Who we are, how we use your information and information about our Data Protection Officer?
• What kinds of personal information about you do we process?
• Why do we need this information from you?

• How do we lawfully use your data? (What are the legal grounds for our processing of your personal information (including when we share it with others)?
• Categories of personal data (What are the types of personal data that are shared with others?)
• How do we maintain the confidentiality of your records?
• Where do we store your information Electronically?
• Who are our partner organisations?
• Sharing your information without consent
• How long will we store your information?

• Why can sharing data with other organisations be helpful?
• What is changing regarding sharing of data with others?

• Do GPs have to share our data with other organisations?
• What are the concerns regarding the mass extraction of data?

• How you can opt out of sharing data with other organisations if you wish to do so

Who we are, how we use your information and information about our Data Protection Officer?

The General Data Protection Regulation (GDPR) and the Data Protection Act 2018 became law on 25th May 2018. The GDPR is a single EU-wide regulation on the protection of confidential and sensitive information, the DPA 2018 deals with elements of UK law that differ from the European Regulation. These came into force in the UK on the 25th May 2018, repealing the previous Data Protection Act (1998).

For the purpose of applicable data protection legislation (including but not limited to the General Data Protection Regulation (Regulation (EU) 2016/679) (the “GDPR”), and the Data Protection Act 2018 the practice responsible for your personal data is Portcullis Practice. Portcullis Surgery will be what’s known as the ‘Controller’ of the personal data you provide to us.

This Notice describes how we collect, use and process your personal data, and how, in doing so, we comply with our legal obligations to you. Your privacy is important to us, and we are committed to protecting and safeguarding your data privacy rights

What kinds of personal information about you do we process?

We collect basic personal data about you which does include special types of information and location-based information. This does include name, address, medical conditions, contact details such as email and mobile number etc.

NHS health records may be electronic, on paper or a mixture of both, and we use a combination of working practices and technology to ensure that your information is kept confidential and secure. Records which the Practice hold about you may include the following information;

• Details about you, such as your address, carer, legal representative, emergency contact details
• Any contact the surgery has had with you, such as appointments, clinic visits, emergency appointments, etc.
• Notes and reports about your health
• Details about your treatment and care
• Results of investigations such as laboratory tests, x-rays etc
• Relevant information from other health professionals, relatives or those who care for you
• Contact details (including email address, mobile telephone number and home telephone number)

We will collect sensitive confidential data known as “special category personal data”, in the form of health information, religious belief (if required in a healthcare setting) ethnicity, and sex during the services we provide to you and or linked to your healthcare through other health providers or third parties.

How do we lawfully use your data?

We need to know your personal, sensitive and confidential data in order to provide you with Healthcare services as a General Practice, under the General Data Protection Regulation we will be lawfully using your information in accordance with: –

Article 6, e) processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller;”

Article 9, (h) processing is necessary for the purposes of preventive or occupational medicine, for the assessment of the working capacity of the employee, medical diagnosis, the provision of health or social care or treatment or the management of health or social care systems

This Privacy Notice applies to the personal data of our patients and the data you have given us about your carers/family members.

Categories of personal data

The data collected by Practice staff in the event of a safeguarding situation will be as much personal information as is necessary or possible to obtain in order to handle the situation. In addition to some basic demographic and contact details, we will also process details of what the safeguarding concern is. This is likely to be special category information (such as health information).

Sources of the data

The Practice will either receive or collect information when someone contacts the organisation with safeguarding concerns, or we believe there may be safeguarding concerns and make enquiries to relevant providers.

Recipients of personal data

The information is used by the Practice when handling a safeguarding incident or concern. We may share information accordingly to ensure duty of care and investigation as required with other partners such as local authorities, the police or healthcare professionals (i.e. their GP or mental health team).

Third party processors

In order to deliver the best possible service, the practice will share data (where required) with other NHS bodies such as other GP practices and hospitals. In addition, the practice will use carefully selected third party service providers. When we use a third party service provider to process data on our behalf then we will always have an appropriate agreement in place to ensure that they keep the data secure, that they do not use or share information other than in accordance with our instructions and that they are operating appropriately. Examples of functions that may be carried out by third parties includes:

• Companies that provide IT services & support, including our core clinical systems; systems which manage patient facing services (such as our website and service accessible through the same); data hosting service providers; systems which facilitate appointment bookings or electronic prescription services; document management services etc.

• Delivery services (for example if we were to arrange for delivery of any medicines to you).

• Payment providers (if for example you were paying for a prescription or a service such as travel vaccinations).

How do we maintain the confidentiality of your records?

We are committed to protecting your privacy and will only use information collected lawfully in accordance with:

• Data Protection Act 2018
• The General Data Protection Regulations 2016
• Human Rights Act 1998
• Common Law Duty of Confidentiality
• Health and Social Care Act 2012
• NHS Codes of Confidentiality, Information Security and Records Management
• Information: To Share or Not to Share Review

Every member of staff who works for an NHS organisation has a legal obligation to keep information about you confidential.

We will only ever use or pass on information about you if others involved in your care have a genuine need for it. We will not disclose your information to any third party without your permission unless there are exceptional circumstances (i.e. life or death situations), where the law requires information to be passed on and / or in accordance with the information sharing principle following Dame Fiona Caldicott’s information sharing review (Information to share or not to share) where “The duty to share information can be as important as the duty to protect patient confidentiality.” This means that health and social care professionals should have the confidence to share information in the best interests of their patients within the framework set out by the Caldicott principles.

Our practice policy is to respect the privacy of our patients, their families and our staff and to maintain compliance with the General Data Protection Regulations (GDPR) and all UK specific Data Protection Requirements. Our policy is to ensure all personal data related to our patients will be protected.

All employees and sub-contractors engaged by our practice are asked to sign a confidentiality agreement. The practice will, if required, sign a separate confidentiality agreement if the client deems it necessary. If a sub-contractor acts as a data processor for [Practice Name] an appropriate contract (art 24-28) will be established for the processing of your information.

In Certain circumstances you may have the right to withdraw your consent to the processing of data. Please contact the Data Protection Officer in writing if you wish to withdraw your consent. If some circumstances we may need to store your data after your consent has been withdrawn to comply with a legislative requirement.

Some of this information will be held centrally and used for statistical purposes. Where we do this, we take strict measures to ensure that individual patients cannot be identified. Sometimes your information may be requested to be used for research purposes – the surgery will always gain your consent before releasing the information for this purpose in an identifiable format.  In some circumstances you can Opt-out of the surgery sharing any of your information for research purposes.

Where do we store your information Electronically?

All the personal data we process is processed by our staff in the UK however for the purposes of IT hosting and maintenance this information may be located on servers within the European Union.

No 3rd parties have access to your personal data unless the law allows them to do so and appropriate safeguards have been put in place Such as a Data Processor as above). We have a Data Protection regime in place to oversee the effective and secure processing of your personal and or special category (sensitive, confidential) data.

EMIS Web

The Practice uses a clinical system provided by a Data Processor called EMIS, with effect from 10^th June 2019, EMIS will start storing your practice’s EMIS Web data in a highly secure, third party cloud hosted environment, namely Amazon Web Services (“AWS”).

The data will remain in the UK at all times and will be fully encrypted both in transit and at rest. In doing this, there will be no change to the control of access to your data and the hosted service provider will not have any access to the decryption keys. AWS is one of the world’s largest cloud companies, already supporting numerous public sector clients (including the NHS), and it offers the very highest levels of security and support.

Who are our partner organisations?

We may also have to share your information, subject to strict agreements on how it will be used, with the following organisations;

• NHS Trusts / Foundation Trusts
• GP’s
• Primary Care Network
• NHS Commissioning Support Units
• Independent Contractors such as dentists, opticians, pharmacists
• Private Sector Providers
• Voluntary Sector Providers
• Ambulance Trusts
• Clinical Commissioning Groups
• Social Care Services
• NHS England (NHSE) and NHS Digital (NHSD)
• Multi Agency Safeguarding Hub (MASH)
• Local Authorities
• Education Services
• Fire and Rescue Services
• Police & Judicial Services
• Voluntary Sector Providers
• Private Sector Providers
• Other ‘data processors’ which you will be informed of

You will be informed who your data will be shared with and in some cases asked for consent for this to happen when this is required.

Primary Care Network

The objective of primary care networks is for group practices together to create more collaborative workforces which ease the pressure of GP’s, leaving them better able to focus on patient care. The aim is that by July 2019, all areas within England will be covered by a PCN.

Primary care networks form a key building block of the NHS long-term plan. Bringing general practices together to work at scale has been a policy priority for some years for a range of reasons, including improving the ability of practices to recruit and retain staff; to manage financial and estates pressures; to provide a wider range of services to patients and to more easily integrate with the wider health and care system.

All GP practices are expected to come together in geographical networks covering populations of approximately 30–50,000 patients by June 2019 if they are to take advantage of additional funding attached to the GP contract. This size is consistent with the size of the primary care homes, which exist in many places in the country, but much smaller than most GP Federations.

This means the practice may share your information with other practices within the PCN to provide you with your care and treatment.

Computer System This practice operates a Clinical Computer System on which NHS Staff record information securely. This information can then be shared with other clinicians so that everyone caring for you is fully informed about your medical history, including allergies and medication.

To provide around the clock safe care, unless you have asked us not to, we will make information available to trusted organisations. Wherever possible, their staff will ask your consent before your information is viewed.

We consider patient consent as being the key factor in dealing with your health information.

Shared Care Records

To support your care and improve the sharing of relevant information to our partner organisations when they are involved in looking after you, we will share information to other systems. The general principle is that information is passed to these systems unless you request this does not happen, but that system users should ask for your consent before viewing your record.

We may also use external companies to process personal information, such as for archiving purposes. These companies are bound by contractual agreements to ensure information is kept confidential and secure. All employees and sub-contractors engaged by our practice are asked to sign a confidentiality agreement. If a sub-contractor acts as a data processor for [Practice Name] an appropriate contract (art 24-28) will be established for the processing of your information.

Sharing your information without consent

We will normally ask you for your consent, but there are times when we may be required by law to share your information without your consent, for example:

• where there is a serious risk of harm or abuse to you or other people;
• where a serious crime, such as assault, is being investigated or where it could be prevented;
• notification of new births;
• where we encounter infectious diseases that may endanger the safety of others, such as meningitis or measles (but not HIV/AIDS);
• where a formal court order has been issued;
• where there is a legal requirement, for example if you had committed a Road Traffic Offence.

How long will we store your information?

We are required under UK law to keep your information and data for the full retention periods as specified by the NHS Records management code of practice for health and social care and national archives requirements.

More information on records retention can be found online at (https://digital.nhs.uk/article/1202/Records-Management-Code-of-Practice-for-Health-and-Social-Care-2016)

Why can sharing data with other organisations be helpful?

There are advantages of sharing information with other organisations.

• These records help to provide you with the best possible healthcare.

To ensure you receive the best possible care, your records are used to facilitate the care you receive, including contacting you. Information held about you may be used to help protect the health of the public and to help us manage the NHS and the services we provide. Information may be used within the GP practice for clinical audit to monitor the quality of the service provided.

• Risk Stratification

Information about you can be collected from several sources including NHS Trusts and from this GP Practice. A risk score is then arrived at through an analysis of your de-identified information is only provided back to your GP as data controller in an identifiable form. Risk stratification enables your GP to focus on preventing ill health and not just the treatment of sickness. If necessary, your GP may be able to offer you additional services. Please note that you have the right to opt out of your data being used in this way.

“Information from care records may be used to identify individual patients from the risk stratified data when it is necessary to discuss the outcome and consider preventative care. Risk stratified information specifically relating to children and young people’s asthma is shared with specialist children’s Asthma care providers in Shropshire Community Healthcare Trust and Shropshire and Telford Hospitals to enhance the delivery of our services”

• Medicines Management

The Practice may conduct Medicines Management Reviews of medications prescribed to its patients. This service performs a review of prescribed medications to ensure patients receive the most appropriate, up to date and cost-effective treatments.

• Patient Communication

The Practice will use like to use your name, contact details and email address to inform you of NHS services, or provide inform about your health/information to manage your healthcare or information about the management of the NHS service. There may be occasions were authorised research facilities would like you to take part in research in regard to your particular health issues, to try improve your health, your contact details may be used to invite you to receive further information about such research opportunities.

• Safeguarding

The Practice is dedicated to ensuring that the principles and duties of safeguarding adults and children are holistically, consistently and conscientiously applied with the wellbeing of all, at the heart of what we do.

Our legal basis for processing For the General Data Protection Regulation (GDPR) purposes is: –

Article 6(1)(e) ‘…exercise of official authority…’.

For the processing of special categories data, the basis is: –

Article 9(2)(b) – ‘processing is necessary for the purposes of carrying out the obligations and exercising specific rights of the controller or of the data subject in the field of employment and social security and social protection law…’

• Research

Clinical Practice Research Datalink (CPRD) collects de-identified patient data from a network of GP practices across the UK. Primary care data are linked to a range of other health related data to provide a longitudinal, representative UK population health dataset. You can opt out of your information being used for research purposes at any time, full details can be found here: –

https://cprd.com/transparency-information

The legal bases for processing this information for research purposes.

NHS Digital (formally the Health and Social Care Centre) may process ‘personal data’ for us as an accredited ‘safe haven’ or ‘trusted third-party’ within the NHS when linking GP data with data from other sources. The legal bases for processing this data are:

• Medicines and medical device monitoring: Article 6(e) and Article 9(2)(i) – public interest in the area of public health
• Medical research and statistics: Article 6(e) and Article 9(2)(j) – public interest and scientific research purposes

Any data CPRD hold or pass on to bona fide researchers, except for clinical research studies, will have been anonymised in accordance with the Information Commissioner’s Office Anonymisation Code of Practice. We will hold data indefinitely for the benefit of future research, but studies will normally only hold the data we release to them for twelve months.

NHS Digital Information

NHS Digital has been collecting data from GPs to meet bespoke data requests for these purposes for over ten years, through the General Practice Extraction Service (GPES). This system is now being replaced with their new General Practice Data for Planning and Research (GPDPR) service, a broader general-purpose collection which will enable faster access to pseudonymised patient data for planners and researchers.

GPs have been informed that there will be a planned mass extraction of data but the date is not finalised yet. With regards to GPDPR specifically, the data will start to flow from the 1 September and patients would need to opt out ahead of this date if they do not want their data to be shared. Any opt-outs received after this date will still be applied, but the data extracted to date will not be retrievable. For every NHS patient in England, entire records will be downloaded. Under GPDPR, NHS Digital will collect medication, referral and appointment data for the previous 10 years, as well as other medical record data for the patients’ entire history, including symptoms, diagnoses and immunisations. This includes sensitive diagnoses of mental health problems, sexually transmitted infections or terminations of pregnancy, and every test result and medication prescribed. These records will be “pseudonymised” – which means that the identifiers such as date of birth, NHS number and exact postcode will be replaced by a code.

Do GPs have to share our data with other organisations when this is implemented?

The short answer is “Yes we have to”. GPs are in a difficult position: we are the legal guardians of our patients’ confidential information, given to us in trust. We also have a legal duty to pass on this information to NHS Digital unless patients have opted out.

What are the concerns regarding the mass extraction of patient data from GP records?

The nationally mandated, planned mass extraction of patient data from GP records has already been delayed from July to September following concerns raised regarding the lack of clear guidance and information, and the very short notice period to opt-out.

As discussed in the guardian article by Dr Ameen Kamlana and Pulse articles by Dr Awil Mohamoud (see links below) there are a number of concerns regarding this new GPDPR system.

• There has been no public awareness campaign arranged by the Government.
  • In 2013 every patient in the UK was sent a letter by the Government about the scheme to extract GP medical records, “data”, to inform them about their choice to opt out of the scheme. This has not been repeated for GPDPR.

• Extraction of data following the 1^st September 2021 is IRREVERSIBLE unless you opt out prior to this date.
  • An NHS Digital spokesperson said: ‘Patients are able to register an opt out at any time and the data will cease to flow. This does not apply retrospectively to data that has already been collected prior to the individual opting out. With regards to GPDPR specifically, the data will start to flow from the 1 September and patients would need to opt out ahead of this date if they do not want their data to be shared.’

• The National Care. Data Scheme in 2013, was scrapped following concerns about the security and confidentiality of “pseudonomised” data sharing and a lack of clarity and transparency about who could access this data and how it would be used. GPDPR data will also be “pseudonomised” with similar concerns.
  • In 2016, Google DeepMind established a data-sharing agreementwith the Royal Free hospital in London. The hospital was found to have failed to comply with the Data Protection Act in handing over the personal information of 1.6 million patients without adequately informing them.

• The scale of data extracted for GPDPR is unprecedented and bigger than the care data scheme and includes sensitive data that was excluded from the scrapped care data scheme.
  • Phil Booth, coordinator of MedConfidential, a data confidentiality advocacy group, told Pulse that the new GPDPR system is ‘far bigger’ than the controversial data sharing scheme, care.data, which was scrappedin 2016, following concerns about patient confidentiality and how the data would be used. He said: ‘Care.data was only prospective, from the point it would have collected, it would have collected going forwards. This is people’s entire coded GP history on first upload and then daily thereafter for any changes. It’s far bigger than care.data. It’s also taking thousands of sensitive codes, which care.data specifically excluded.’

https://www.theguardian.com/commentisfree/2021/jun/03/gp-nhs-digital-data-patients-records-england

https://www.pulsetoday.co.uk/news/workload/new-gp-data-extraction-far-exceeds-care-data-plans-warn-privacy-campaigners/

https://www.pulsetoday.co.uk/news/technology/nhs-digital-gave-gpdpr-opt-out-deadline-in-error-says-gps-must-set-own-dates/

How you can opt out of sharing data with other organisations if you wish to do so?

If after reading all the information you choose to opt in or out of one or all three types of records you need to do as follows

OPT IN

• Basic SCR (Record 1A) -no need to opt in it will be created automatically

• Enriched SCR-please fill in the form below and send to the practice

• One Health and Care Local Integrated Care Record (RECORD 2)-no need to opt in it will be created automatically

• NHS digital record (RECORD 3)-no need to opt in it will be created automatically

OPT OUT

• Basic SCR (Record 1A) -please fill in the form below and send to the practice

• Enriched SCR-please fill in the form below and send to the practice

• One Health and Care Local Integrated Care Record (RECORD 2)-please fill in the form below and send to the practice

• NHS digital record (RECORD 3)-you need to opt out by contacting NHS Digital on visit nhs.uk/your-nhs-data-matters or call 0300 303 5678 . Your GP surgery cannot do this for you. You can also opt out on the NHS app.

You have a right to choose who your data is shared with and can opt out if you wish to do so.

You have a choice about whether you want your confidential patient information to be used in this way. If you are happy with this use of information you do not need to do anything.

If you do choose to opt-out your confidential patient information will still be used to support your individual care.

To find out more or to register your choice to opt out.

https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research#opting-out

If you don’t want your identifiable patient data to be shared for purposes except for your own care, you can opt-out by registering a National Data Opt-out .

National Data Opt-out

This system has been in place for some time and applies to opting out of your confidential patient information being used or shared for research and planning only, you can choose to opt out securely online or through a telephone service. You can change your choice at any time. To find out more or to make your choice visit nhs.uk/your-nhs-data-matters or call 0300 303 5678

How can you access, amend move the personal data that you have given to us?

Even if we already hold your personal data, you still have various rights in relation to it. To get in touch about these, please contact us. We will seek to deal with your request without undue delay, and in any event in accordance with the requirements of any applicable laws. Please note that we may keep a record of your communications to help us resolve any issues which you raise.

Right to object: If we are using your data because we deem it necessary for our legitimate interests to do so, and you do not agree, you have the right to object. We will respond to your request within 30 days (although we may be allowed to extend this period in certain cases). Generally, we will only disagree with you if certain limited conditions apply.

Right to withdraw consent: Where we have obtained your consent to process your personal data for certain activities (for example for a research project), or consent to market to you, you may withdraw your consent at any time.

Right to erasure: In certain situations (for example, where we have processed your data unlawfully), you have the right to request us to “erase” your personal data. We will respond to your request within 30 days (although we may be allowed to extend this period in certain cases) and will only disagree with you if certain limited conditions apply. If we do agree to your request, we will Delete your data but will generally assume that you would prefer us to keep a note of your name on our register of individuals who would prefer not to be contacted. That way, we will minimise the chances of you being contacted in the future where your data are collected in unconnected circumstances. If you would prefer us not to do this, you are free to say so. However with GPDPR this erasure of data once uploaded on 1st September may no longer be possible.

Right of data portability: If you wish, you have the right to transfer your data from us to another data controller. We will help with this with a GP to GP data transfer and transfer of your hard copy notes.

Access to your personal information

Data Subject Access Requests (DSAR): You have a right under the Data Protection legislation to request access to view or to obtain copies of what information the surgery holds about you and to have it amended should it be inaccurate. To request this, you need to do the following:

• Your request should be made to the Practice – for information from the hospital you should write direct to them
• There is no charge to have a copy of the information held about you
• We are required to respond to you within one month
• You will need to give adequate information (for example full name, address, date of birth, NHS number and details of your request) so that your identity can be verified, and your records located information we hold about you at any time.

What should you do if your personal information changes?

You should tell us so that we can update our records please contact the Practice Manager as soon as any of your details change, this is especially important for changes of address or contact details (such as your mobile phone number), the practice will from time to time ask you to confirm that the information we currently hold is accurate and up-to-date.

Objections / Complaints

Should you have any concerns about how your information is managed at the GP, please contact the GP Practice Manager or the Data Protection Officer as above. If you are still unhappy following a review by the GP practice, you have a right to lodge a complaint with a supervisory authority: You have a right to complain to the UK supervisory Authority as below.

Information Commissioner:

Wycliffe house, Water Lane, Wilmslow, Cheshire, SK9 5AF

Tel:       01625 545745

https://ico.org.uk/

If you are happy for your data to be extracted and used for the purposes described in this privacy notice, then you do not need to do anything. If you have any concerns about how your data is shared, then please contact the Practice Data Protection Officer.

If you would like to know more about your rights in respect of the personal data we hold about you, please contact the Data Protection Officer as below.

Data Protection Officer:

The Practice Data Protection Officer is Paul Couldrey of PCIG Consulting Limited. Any queries regarding Data Protection issues should be addressed to him at: –

Email:   Couldrey@me.com

Postal: PCIG Consulting Limited, 7 Westacre Drive, Quarry Bank, Dudley, West Midlands, DY5 2EE

Changes:

It is important to point out that we may amend this Privacy Notice from time to time. If you are dissatisfied with any aspect of our Privacy Notice, please contact the Practice Data Protection Officer.