Use of personal health information

Health data and information are safeguarded not only by the duty of confidentiality of the medical profession, but also by data protection laws. These laws are changing and evolving so that your personal data can still be secure in the ever-advancing digital age in which we live. Most recently, General Data Protection Regulation (GDPR) came into force in the UK in May 2018, as did the 2018 update to the Data Protection Act.

Please read our North East LONDON ICB further information on how your data is used here

Please also read our NEL Population Health Management information data sharing information here

Data protection laws keeping data secure

The NHS holds data on everyone who uses the service. It is obliged to maintain confidentiality and keep the data safe. It is also obliged to share that information in certain circumstances – for example, with other health professionals looking after you. It is important that this information is stored and shared securely and according to law. A number of laws and regulations help to keep data secure, including:

• General Data Protection Regulation (GDPR). This is a new EU directive which came into force in May 2018, to help keep data safe in the digital age. The basic principles of the way the NHS handles your data are unchanged by this new regulation. Information must be handled and processed in a way which is secure, accurate and lawful. GDPR adds that data breaches must be reported promptly and they lead to large penalties (fines).
• The Data Protection Act. This is the law for data protection in the UK, which sets out how GDPR is applied to the UK specifically. The 1998 Act was updated in 2018 in order to be in line with the EU regulation.

Organisations and individuals who help to keep data secure

• Data controllers. This applies to the health organisation as a whole and the GP practices, community services and hospitals, etc, who work within it. All have to handle and process data under strict guidelines.
• NHS Digital. The organisation now known as NHS Digital calls itself the national information and technology partner to the health and care system. NHS Digital collects, publishes and processes data and information from across the health and social care system in England. It has systems in place for ensuring this to-and-fro of information is secure and appropriate. Similar organisations operate in Scotland (Information and Statistics Division of the NHS in Scotland), Northern Ireland (The Health & Social Care Board, N. Ireland) and Wales (NHS Wales Informatics Service).
• The Caldicott Guardian. This is the name for the ‘National Data Guardian’ who works with the government and the NHS to provide advice to professionals on keeping healthcare information secure. In 2014, Dame Fiona Caldicott became the first such guardian. She provides guidance and challenge to the government on data issues such as patient confidentiality, information sharing and avoiding abuse of public trust in how health and care data are used The latest guidance on how to achieve data standards is called The Data Security and Protection (DSP) Toolkit.

Accessing your own data and health information

You have the right to see the information the NHS holds on you personally. You can do this via GP online systems or by asking to see or have copies of part or all of your records. You will not be charged for this, within limits.

If your child is thought to be able to understand about sharing information then they will need to give consent before you can access any information about them. This varies but is usually thought to apply to children from the age of 12 years or so.

You have no right to access health information on your ‘next of kin’ unless they request this and consent to it.

Sharing your health data and information

Some of the information the NHS holds about you is administrative – your name, gender, date of birth, address, etc. Other information is highly sensitive personal health information about you. This includes medical conditions and medications. It can be shared in a way which is identifiable, anonymous, or somewhere in between, depending on the purpose. At times, the NHS may need to share your data or health information, sometimes for your personal benefit, other times in the public interest. Other than when there is a danger to others or yourself involved, you have the option to ‘opt out’ and not to allow sharing of this information.

Some of the situations where data or information is shared are briefly explained below.

• Summary Care Record (SCR). The idea of the SCR is that basic health information about you personally is available electronically across health settings. So if you found yourself unconscious in an A&E department, for example, the doctors there would be able to see any medication, allergies or medical conditions which might be crucial to them looking after you. Only authorised staff who are directly involved in caring for you can see it. Your SCR is created automatically by your GP practice, unless you have chosen to opt out. If you choose to opt out, tell your GP or fill in an opt-out form and give it to your GP practice. (The forms are usually available on the practice website).
• Other sharing between other health professionals. Your GP will need to share basic health information about you when referring you to another NHS service – for example, a specialist hospital clinic, A&E, a district nurse, podiatrist, physiotherapist, etc. They are obliged to only share the relevant information within your records. Likewise, if you are seen in a hospital clinic, the doctor there will write back to your GP telling them the outcome.
• NHS Digital. Health and administrative information (patient data) about you is used directly for your care but is also put to another ‘secondary’ use. This includes planning the way health service resources are allocated and organised, research into new and existing treatments, and improving the way in which conditions are diagnosed. Usually the way in which this information is used is non-identifiable or anonymous, but sometimes it is used in a way which can be traced to specific people. NHS Digital, which manages this flow of information, has undertaken not to pass any information on to firms trying to sell you products or services, or to insurance companies. It is also committed to keeping that information as securely as possible. You have the choice to allow this flow of information, to help with research and NHS planning, or to ‘opt out’ if you are concerned about the security or secondary use of information about you. In May 2018, along with GDPR, the ‘National Data Opt-out’ was introduced. Adults and teenagers from the age of 13 years have the right to opt out. To read more about what patient data are used for, and how to opt out, visit NHS Digital or the NHS page about your data.
• Insurance company requests. When you apply for insurance (eg, for a mortgage or critical illness cover), the company will often want medical information from your GP. Your GP will only give this information if you have agreed (consented). However, unfortunately if you do not agree, you may not be able to get the insurance. The insurance company can only ask for relevant information, and you or your GP can object if they request your full records if this is not relevant.

The practice manages the confidentiality of your medical records in accordance with the Data Protection Act 1998. Our ICB may require some of this data for auditing and research purposes. You may request that your data is excluded from these audits and research at any time. Please speak with reception for more information.

Please click HERE and HERE for important information on how North East London ICB uses your medical records & General Data Protection Regulation (GDPR):

Your Data Matters to the NHS

Information about your health and care helps us to improve your individual care, speed up diagnosis, plan your local services and research new treatments. The NHS is committed to keeping patient information safe and always being clear about how it is used.

How your data is used

Information about your individual care such as treatment and diagnosis is collected about you whenever you use health and care services. It is also used to help us and other organisations for research and planning such as research into new treatments, deciding where to put GP clinics and planning for the number of doctors and nurses in your local hospital.

It is only used in this way when there is a clear legal basis to use the information to help improve health and care for you, your family and future generations.

Wherever possible we try to use data that does not identify you, but sometimes it is necessary to use your confidential patient information.

You have a choice

You do not need to do anything if you are happy about how your information is used. If you do not want your confidential patient information to be used for research and planning, you can choose to opt out securely online or through a telephone service. You can change your mind about your choice at any time.

Will choosing this opt-out affect your care and treatment?

No, choosing to opt out will not affect how information is used to support your care and treatment. You will still be invited for screening services, such as screenings for bowel cancer.

What do you need to do?

If you are happy for your confidential patient information to be used for research and planning, you do not need to do anything.

To find out more about the benefits of data sharing, how data is protected, or to make/change your opt-out choice visit www.nhs.uk/your-nhs-data-matters.

GPDPR – 1st September 2021

The data held in the GP medical records is used to support health and care planning and research in England, helping to find better treatments and improve patients outcomes for everyone.

You may have seen concerns expressed in the media this June 2021 about the new ways the NHS plans to collect / extract patient data; for planning purposes. The pre-1st September GP data Extraction System (GPES) ,is due to be replaced on 1st September 2021 with a new system called the General Practice Data for Planning and Research (GPDPR) under legal legislation (General Practice Data for Planning and Research (GPDPR) – NHS Digital).

The British Medical Association’s statement is a good summary of what is going on and that it is a legal obligation for general practices like WLMC to comply:

“NHS Digital issued a DPN (data provision notice) on 12 May 2021 as part of the development of GPDPR (GP data for planning and research). This is a planned replacement for the GPES (GP extraction service) to collect data for planning and research from general practices in England.

It is a legal obligation to comply with the DPN as a result of a new direction from the secretary of state for health and social care as part of the Health and Care Act 2012. Once fully established, this new collection will replace multiple other data collections from general practices. Read our full statement >

However, GPC England chair Richard Vautrey and RCGP chair Martin Marshall wrote to NHS Digital at the end of last week to express their concerns about the lack of communication with the public regarding the GPDPR programme. Read their information to the public and practices >

GPC England and the RCGP informed NHS Digital that while they are aware of the crucial role that GP data plays in research and planning to improve public health, it is important that any sharing of data is transparent and maintains public trust in how general practice and the NHS uses their information.

We have strongly lobbied NHS Digital to reconsider their timetable for implementation and called on them to run a comprehensive and significant public awareness campaign to increase communication with patients and practices.”

What Data is shared?

The extraction will take almost all the coded data from our patients record and pseudonymise (not anonymise) it for the purpose of research and planning.  

The data that may be shared will be data from patients medical records about:

·         Any living patient registered at a GP practice in England when the collection started- this includes adults and children

·         Any patient who dies after 1^st July 2021, and was previously registered at a GP practice in England when the data collection started.

The NHS does not collect patients names or addresses. 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. This process is called pseudonymisation, and means the patient will not be identified directly in the data.

What are Some Concerned About? 

Some GPs and privacy campaigners are concerned about issues of data security. There is a long list of organisations outside the NHS, detailed on the NHS Digital website, including other government departments, research bodies, charities and pharmaceutical companies, with whom they might share the data.

Pseudoanonymisation can be reversed, according to NHS Digital, if there is “a valid legal reason” to do so. Concerns are that it is not clear what such a reason might be, but the fact that it is possible to re-identify the records may be a cause for concern.

Some are not confident that the tight rules and contracts proposed to prevent recipients of the data doing their own work to re-identify patients – for example, by combining bits of data with information gleaned from social media – will be 100% effective.

Most doctors and most patients are only just learning about this project, and at a time when General Practice is exceptionally busy and when time is short to give this matter consideration.  (Ref Apple News – Helen Salisbury – June 1, 2021 10:40 am (Updated June 1, 2021 2:14 pm)

How Can You Opt Out?

There are two types of opting out

1- Opt out by submitting this form to your GP

2- For any data that has left the GP practice, you would also need to register your objection here: Overview – Choose if data from your health records is shared for research and planning – NHS (www.nhs.uk)

OpenSAFELY

“NHS England has been directed by the government to establish and operate the OpenSAFELY COVID-19 Service and the OpenSAFELY Data Analytics Service. These services provide a secure environment that supports research, clinical audit, service evaluation and health surveillance for COVID-19 and other purposes.

Each GP practice remains the controller of its own GP patient data but is required to let approved users run queries on pseudonymised patient data. This means identifiers are removed and replaced with a pseudonym.

Only approved users are allowed to run these queries, and they will not be able to access information that directly or indirectly identifies individuals.

Patients who do not wish for their data to be used as part of this process can register a type 1 opt outwith their GP.

Here you can find additional information about OpenSAFELY.”

As instructed by the North East London Chief Medical Officer, rather than automatically, access to your records can be applied for through our team and we will review and enable access. Our priority is your safety and providing optimal medical care so please bear with us regards timescale.

The NHS wants to give people better ways to see their personal health information online. We know that people want to be able to access their health records. It can help you see test results faster. It also lets you read and review notes from your appointments in your own time.

If you are over 16 and have an online account, such as through the NHS App, NHS website, or another online primary care service, you may then be able to see all future notes and health records from your doctor (GP). Some people can already access this feature, this won’t change for you.

This means that you will be able to see notes from your appointments, as well as test results and any letters that are saved on your records. This only applies to records from your doctor (GP), not from hospitals or other specialists. You will only be able to see information from 31/10/22.

These changes only apply to people with online accounts. If you do not want an online account, you can still access your health records by requesting this information through reception. The changes also only apply to personal information about you.

The NHS App, website and other online services are all very secure, so no one is able to access your information except you.

Please note your responsibilities.  If you are concerned about these please be very strongly consider if setting up online access to your records is right for you:

1. You’ll need to make sure you protect your login details. Don’t share your password with anyone as they will then have access to your personal information. We cannot be responsible for someone else accessing your records with your log in details.
2. If you find information in your record which is regarding someone else, eg a letter or test result which has been accidentally saved in your record, you must not share this information and you must report it to the practice immediately so we can correct this.
3. By looking at your records online be aware that you may see test results or information which you find alarming. You may see these before a clinician has had the opportunity to discuss the results or information with you. It may be that the clinician you need to discuss the information or results with is a hospital specialist rather than a clinician from the practice.

Changes to prescribing and other services

In order to protect funding our most essential Health services- things like cancer care, emergency care, life threatening conditions and mental health services, North East London Integrated Care Board have a list of treatments/interventions that are only funded by the NHS when a patient meets certain clinical threshold criteria

The NHS has Stopped Doctors from Prescribing the Following on the NHS:

• Over the Counter pain killers for short term problems such as Paracetamol, Ibuprofen, Co-codamol
• Many other medicines which are available over the counter from your pharmacy
• Gluten-free products
• Medicines for dental conditions
• Head lice and scabies medicines
• Rubefacient creams and gels such as Deep Heat and Tiger Balm
• Omega-3 and other fish oil supplements
• Multivitamin supplements
• Eye vitamin supplements
• Colic remedies for babies
• Cough and Cold Remedies
• Soya-based formula milk
• Antimalarials
• Threadworm medicine
• Over the counter Sleeping Tablets
• Hay Fever medicine (for mild and moderate)
• Travel Sickness medicine
• Vitamin D maintenance
• Probiotics
• Bath oils, shower gels, shampoos
• Creams for mild/moderate skin conditions
• Sunscreens except cancer/specialist

Procedures the local NHS will no longer normally fund:

• Procedures	Speciality
  Acupuncture	Alternative therapy
  Herbal medicines	Alternative therapy
  Homeopathy	Alternative therapy
  Excess skin excision from buttocks, thighs and arms	Bariatric surgery
  Liposuction	Bariatric surgery
  Surgery to correct divarification (or diastasis) of the abdominal rectus muscle	Bariatric surgery
  Breast augmentation	Breast
  Breast lift (mastopexy)	Breast
  Male breast reduction (gynaecomastia)	Breast
  2L Exercise ECG for screening for coronary heart disease (Treadmill test for heart disease)	Cardiology
  Face lifts and brow lifts (rhytidectomy)	Dermatology & Skin
  Hair transplantation	Dermatology & Skin
  Repair of split ear lobes	Dermatology & Skin
  Tattoo removal	Dermatology & Skin
  Treatment for scarring and skin hyper- or hypo- pigmentation	Dermatology & Skin
  Surgical interventions for snoring in the absence of obstructive sleep apnoea	ENT
  Double balloon enteroscopy for diagnostic purpose	Gastroenterology
  All treatments for vascular lesions	General Surgery
  Cosmetic genital procedures (labiaplasty – excluding Female Genital Mutilation (FGM) (refer to circumcision category 2 prior approval policy)	Gynaecology/Urology
  Dilation & curettage (D&C) for heavy menstrual bleeding in women	Gynaecology/Urology
  MRI guided ultrasound (MRgFUS) for uterine fibroids	Gynaecology/Urology
  Non-medical circumcision	Gynaecology/Urology
  Reversal of female sterilisation and reversal of vasectomy	Gynaecology/Urology
  Sacral nerve stimulation for faecal  and urinary incontinence	Gynaecology/Urology
  Varicocele	Gynaecology/Urology
  White cell apheresis	Haematology
  Ketogenic diet for epilepsy	Medicine
  Laser surgery for short sightedness	Ophthalmology
  Autologous chondrocyte (cartilage) implantation	Orthopaedics
  Injections for non-specific low back pain	Orthopaedics
  Knee arthroscopy for patients with osteoarthritis	Orthopaedics
  Interventional treatments for back pain	Orthopaedics
  — Lumbar disc replacement	Orthopaedics
  —  Ozone discectomy	Orthopaedics
  2Z Helmet therapy for treatment of positional plagiocephaly / brachycephaly in children (Helmets to reshape flat heads in babies)  Individual Funding Request	Paediatrics
  Manual therapies (osteopathy – outside of an MSK integrated service)	Physiotherapy

Why is the NHS/ICB  doing this?

They say: “Like many areas across the country, we are faced with some difficult choices to protect essential health services. The care and treatment that we provide every day for patients is funded by tax payers money. That’s why we have a duty to spend it wisely, to make sure we get the best value we possibly can for every penny- especially when NHS funding is being severely squeezed and we are seeing more patients with more complex health issues than ever before.”

Updated 01/09/2022

WLMC has reviewed it’s benzodiazepine prescribing at a practice meeting 30/08/2022 and established this new policy not to prescribe benzodiazepines or sedatives (such as diazepam) to patients for fear of flying. Many other GP practices have a similar policy. 

People often come to us requesting that we prescribe diazepam for fear of flying or to assist with sleep during flights.

Initially in the 1960s benzodiazepines including Diazepam (also known as ‘Valium’) were hailed as a wonder drug. However, it became increasingly clear that, as well as having short term deleterious effects on memory, co-ordination, concentration and reaction times, they were also addictive, with withdrawal leading to fits, hallucinations, agitation and confusion.  Furthermore, they were found to have long-term effects on cognition and balance. Unfortunately, benzodiazepines have also become a widely used drug of abuse since they first came on the market. Because of these reasons the use of benzodiazepines has been a lot more controlled around the world since the 1980-90s; especially in the UK. Diazepam in the UK is a Class C/Schedule IV controlled drug. The following short guide outlines the issues surrounding its use with regards to flying and why the surgery no longer prescribes such medications for this purpose.

There are a number of very good reasons why prescribing this drug is not recommended.

• The use of any sort of benzodiazepines causes longer reaction times & slowed thinking, which during a flight will put the passenger at significant risk of not being able to act in a manner which could save their life, or that of a loved one or co-passenger, in the event of a safety critical incident. Incapacitation from benzodiazepines is a risk to the lives of all on board the aircraft in the event of an emergency requiring evacuation.
• The use of such sedative drugs can make you fall asleep, however when you do sleep it is an unnatural non-REM sleep. This means you won’t move around as much as during natural sleep. This can cause you to be at an increased risk of developing a blood clot (Deep Vein Thrombosis – DVT) in the leg or even the lungs. Blood clots are very dangerous and can even prove fatal. This risk is even greater if your flight is greater than 4 hours
• Whilst most people find benzodiazepines like diazepam sedating, a small number have paradoxical agitation and in aggression. They can also cause disinhibition and lead you to behave in a way that you would not normally. This could impact on your safety as well as that of other passengers and could also get you into trouble with the law.
• Benzodiazepine use added to alcohol consumption causes an increase in the risk posed by the points above
• According to the prescribing guidelines doctors follow (British National Formulary) diazepam is contraindicated (not allowed) in treating phobic states. It also states that “the use of benzodiazepines to treat short-term ‘mild’ anxiety is inappropriate. Your doctor would be taking a significant legal risk by prescribing against these guidelines. (They are only licensed short term for a crisis in generalised anxiety. If this is the case, you should be getting proper care and support for your mental health and not going on a flight; benzodiazepine doses used for flying previously are not likely control an acute crisis in generalised anxiety disorder.)
• NICE guidelines suggest that medication should not be used for mild and self-limiting mental health disorders. In more significant anxiety related states, benzodiazepines, sedating antihistamines or antipsychotics should not be prescribed
• In some countries it is illegal to import these drugs, e.g. in the Middle East, and so the passenger will need to use a different strategy for the homeward bound journey and / or any subsequent legs of the journey; they may be confiscated or you may find yourself in trouble with the police. The passenger may also need to use a different strategy for the homeward bound journey and/or other legs of the journey.
• Diazepam stays in your system for quite a while. If your job requires you to submit to random drug testingyou may fail this having taken diazepam.
• Benzodiazepines have been linked to the onset of dementia
• A study published in 1997 from the Stanford University School of Medicine (iv) showed that there is evidence use of benzodiazepines stops the normal adjustment response that would gradually lessen anxiety over time and therefore perpetuates and may increase anxiety in the long term, especially if used repeatedly. In an article in Clinical Psychiatry News, Shanna Treworgy, Psy.D., of the Dartmouth Geisel Medical School, said that though there may be reduced anxiety in the moment, benzodiazepines cause increased long-term anxiety reactions.

Given the above we will no longer be providing Diazepam for flight anxiety and instead suggest the below aviation industry recommended flight anxiety courses which are easily accessible for those who wish to fly & conquer their fear of flying, eg:

1. Easy Jet www.fearlessflyer.easyjet.com Tel 0203 8131644
2. British Airways www.flyingwithconfidence.com  Tel 01252 793250
3. Virgin www.flyingwithoutfear.co.uk  Tel 01423 714900
4. https://thefearofflying.com/programs/fly-and-be-calm/

• Flight anxiety does not come under the remit of General Medical Services as defined in the GP contract and so we are not obliged to prescribe for this.
• Patients who still wish to take benzodiazepines for flight anxiety are advised to consult with a private GP or travel clinic.
• It is important to declare all medical conditions and medications you take to your travel insurer. If not, there is a risk of nullifying any insurance policy you may have.

For further information/References:

[i] British National Formulary; Diazepam – https://bnf.nice.org.uk/drug/diazepam.html

[ii] British National Formulary; Hypnotics and anxiolytics – https://bnf.nice.org.uk/treatment-summary/hypnotics-and-anxiolytics.html

[iii] Generalised anxiety disorder and panic disorder in adults: management. NICE Clinical guideline [CG113] Published date: January 2011 Last updated: July 2019 https://www.nice.org.uk/guidance/cg113

[iv] Acute and delayed effects of Alprazolam on flight phobics during exposure. Behav Res Ther. 1997 Sep;35(9):831-41

[v] Travel Health Pro; Medicines and Travel; Carrying medication abroad and advice regarding falsified medication – https://travelhealthpro.org.uk/factsheet/43/medicines-abroad