Your Confidential Records

Your Confidential Records

Your data matters to us at Birchwood Medical Practice. You can be assured that your medical records are safe with Birchwood Medical Practice. We will only share data that identifies you under the following circumstances:

  • With other health care professionals (hospital or community staff) as part of an agreed plan of treatment
  • With your explicit consent, e.g. for participation in research studies
  • In circumstances where it is in the interests of your health and you are not able to give consent, e.g. if you are unconscious
  • Where we are obliged to divulge information under the Health & Social Care Act 2012, e.g. in the case of a national emergency or pandemic
  • Where we are required to do so for health service planning purposes and you have not explicitly opted out of having your data shared (see below)
  • Please see our privacy notices for detailed information

Our strict rules about confidentiality mean that we will not discuss your medical affairs even with your close family unless you give us permission to do so. This includes details of appointments you have made. If you would like your partner, parent, son/daughter or carer to be able to speak to us on your behalf, you must tell us beforehand. Please ask our Reception Team for a consent form if you require an ongoing arrangement for sharing consent. You can withdraw your consent at any time.

Information about your health and care helps the NHS to improve your individual care, speed up diagnosis, plan your local services and research new treatments.

Here is a video to show you how your data is shared from NHS Digital

You have the right to control how medical information about you is shared, disseminated or sold, for purposes other than your direct medical care – so called secondary uses (or purposes).

Secondary uses include projects involved in risk stratification, population health management, national clinical audits, research, healthcare planning, commissioning of healthcare services by CCGs, commercial and even political uses. You can control your personal confidential information by opting out of data sharing.

About the General Practice Data for Planning and Research (GPDPR) programme

NHS Digital is making improvements to how data is collected from general practice, this new framework for data extraction is called the General Practice Data for Planning and Research data collection (GPDPR). The goal of this new system is to:

  • reduce burden on GP practices in managing access to patient data and maintain compliance with relevant data protection legislation
  • improve protections through the consistent and rigorous review of all applications for access to patient data
  • make it easier for patients to understand how their health and care data is being used, including increasing use of Trusted Secure Environments that avoids data flowing outside the NHS

This new NHS Digital service will collect data from GP practices in England and will analyse, publish statistical data and provide safe, secure, lawful and appropriate access to GP data for health and social care purposes. This will include planning, commissioning, policy development, public health purposes (including COVID-19) and research.

NHS Digital is engaging with the British Medical Association (BMA), Royal College of General Practitioners (RCGP) and the National Data Guardian (NDG) to ensure relevant safeguards are in place for patients and GP practices.

Protecting patient data

All data will be pseudonymised and encrypted by your GP system suppliers on your behalf before it is transferred to NHS Digital. Access to GP data will only be via a Trusted Research Environment (TRE) and never copied or shipped outside the NHS secure environment, except where individuals have consented to their data being accessed, e.g. written consent for a research study.

As with the COVID-19 collection, access to the data will be through the NHS Digital Data Access Request Service (DARS) and will be subject to a robust approvals process, which includes oversight by the Independent Group Advising on Release of Data (IGARD) and a Professional Advisory Group, which is made up of representatives from the BMA and RCGP.

Opt-outs

We want to make the position around opt-out much simpler. While 1 September 2021 has been seen by some as a cut-off date for opt-out, after which data extraction would begin, we want to reassure you that this will not be the case and data extraction will not commence until NHS Digital has met the tests.

They are introducing three changes to the opt-out system which mean that patients will be able to change their opt-out status at any time:

  • Patients do not need to register a Type 1 opt-out by 1 September to ensure their GP data will not be uploaded
  • NHS Digital will create the technical means to allow GP data that has previously been uploaded to the system via the GPDPR collection to be deleted when someone registers a Type 1 opt-out
  • The plan to retire Type 1 opt-outs will be deferred for at least 12 months while we get the new arrangements up and running, and will not be implemented without consultation with the RCGP, the BMA and the National Data Guardian

Together, these changes mean that patients can have confidence that they will have the ability to opt-in or opt-out of the system, and that the dataset will always reflect their current preference. And we will ensure it is easy for them to exercise the choice to opt out.

It is important to know that what you decide now is not a permanent decision. Our aim is to provide you with information to make an informed decision but it is okay to change your mind and we will update your records to reflect your preference.

There are 2 types of data sharing.

Type 1 Opt Out

  • What is it?

type 1 opt out prevents information being shared outside a GP practice for purposes other than direct care. Your individual care will not be affected if you opt out.

  • Who do you notify of your decision to opt out

In June 2021 we texted patients the link to this webpage so they had information to enable them to make an informed decision. We followed it up with a further text asking for patients to advise if they wanted to opt out. This exercise is complete but any patient can still ask to opt out or back in at any time.

You can ask for a form at the practice or you can print and sign an opt out form and either bring the original to the practice for processing or take a photo of it and email it to us at bmpractice.reg@nhs.net so that we can update your data sharing preferences. Please note the form and any related text message is only for Type 1 Opt outs – patients need to register a Type 2 Opt out separately – full details further below.

National Data Opt Out

If you do not want NHS Digital to share your identifiable patient data with anyone else for purposes beyond your own care, then you can also register a National Data Opt-out.

  • What is it?

National Data Opt-out (previously known as a Type 2 Opt Out) prevents information being shared outside NHS Digital for purposes beyond the individual’s direct care. Opting out does not affect your individual care.

  • NHS Digital will collect data from GP medical records about patients who have registered a National Data Opt-out. The National Data Opt-out applies to identifiable patient data about your health, which is called confidential patient information.
  • NHS Digital won’t share any confidential patient information about you – this includes GP data, or other data we hold, such as hospital data – with other organisations, unless there is an exemption to this. For example:- If we have a legal Obligation to share the data or if it is in the public interest.

Click here for  full current information regarding these opt-outs

  • Who do you notify of your decision to opt out

National Data Opt Outs are arranged by NHS Digital. If you are aged 13 or older you can go to Make your choice about sharing data from your health records – NHS (www.nhs.uk) and opt out online.

Other ways to make a choice.

You can also make or change a choice for:

  • yourself by phone, email or post
  • someone else by email or post

NHS Digital Contact Centre phone number: 0300 303 5678 – Monday to Friday, 9am to 5pm (excluding bank holidays).

If you’re a parent or legal guardian and you want to opt your children out, you must complete the opt-out form.

Once you’ve completed the form, you can email it to the Contact Centre – enquiries@nhsdigital.nhs.uk

Alternatively, you can post the form to:

National Data Opt Out

Contact Centre

NHS Digital

HM Government

7 and 8 Wellington Place

Leeds

LS1 4AP

 

What is Birchwood Medical Practice doing to inform patients of this change?

To make sure that as many patients as possible know about the scheme and have the opportunity to make a choice, Birchwood Medical Practice are taking the following steps:

  • All staff fully aware to support you with any queries you may have
  • Information available in the practice
  • Information on social media
  • Information on website and links above  and below to NHS websites for further information

 

 

Data Security and Governance

The Government has committed that access to GP data will only be via a Trusted Research Environment (TRE) and never copied or shipped outside the NHS secure environment, except where individuals have consented to their data being accessed e.g. written consent for a research study. This is intended to give both GPs and patients a very high degree of confidence that their data will be safe and their privacy protected.

The TRE will be built in line with best practice developed in projects, such as OpenSAFELY and the Office for National Statistics’ Secure Research Service.

NHS Digital is also committed to adopting a transparent approach, including publishing who has run what query and used which bit of data. They are developing a TRE which will meet their specific needs and act as ‘best in class’.

NHS Digital commits to only begin the data collection once the TRE is in place. Further, they will ensure that the BMA, RCGP and the National Data Guardian have oversight of the proposed arrangements and are satisfied with them before data upload begins.

NHS Digital also confirms the previously published Data Provision Notice for this collection has been withdrawn.

Once the data is collected, it will only be used for the purposes of improving health and care. Patient data is not for sale and will never be for sale.

Transparency, communications and engagement

There has been a great deal of concern regarding the lack of awareness amongst the healthcare system and patients. NHS Digital recognises they need to strengthen engagement, including opportunities for non-digital engagement and communication.

Since the programme has been paused, NHS Digital has been developing an engagement and communications campaign, with the goal of ensuring that the healthcare system and patients are aware and understand what is planned, and can make informed choices. The public rightly look to and trust general practice – through a centrally driven communication campaign, with clear messages, NHS Digital will seek to ensure that the introduction of this collection does not impose an additional burden on practices.

NHS Digital are developing a communications strategy delivered through four phases.

  • Listening – where they listen to stakeholders and gather views on how best to communicate with the profession, patients and the public and give them the opportunity to inform the development of the programme in areas such as opt-outs, trusted research environments and other significant areas
  • Consultation – a series of events where they can explain the programme, listen and capture feedback and co-design the information campaign
  • Demonstration – show how feedback is being used to develop the programme and shape communications to the healthcare system and the public
  • Delivery – of an information campaign to inform the healthcare system and the public about changes to how their GP data is used, that utilises the first three phases to ensure the campaign is accessible, has wide reach and is effective

Data saves lives. The vaccine rollout for COVID-19 could not have been achieved without patient data. The discovery that the steroid Dexamethasone could save the lives of one third of the most vulnerable patients with COVID-19 – those on ventilators – could not have been made without patient data from GP practices in England. That insight has gone on to save a million lives around the globe. That is why this programme is so important.

The programme and NHS Digital will be providing further information as the programme progresses. In the meantime, if you have any questions, you can contact the programme at enquiries@nhsdigital.nhs.uk.

The NHS Digital web pages also provide further information at https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research#additional-information-for-gp-practices.

Q&A NHS Digitial & Data Collections

Why NHS Digital collects general practice data?

  • NHS Digital is the national custodian for health and care data in England and has responsibility for standardising, collecting, analysing, publishing and sharing data and information from across the health and social care system, including general practice.
  • NHS Digital collected patient data from general practices using a service called the General Practice Extraction Service (GPES), now known as GPDPR which has operated for over 10 years and now needs to be replaced.
  • NHS Digital has engaged with doctors, patients, data and governance experts to design a new approach to collect data from general practice that:
    • reduces burden on GP practices
    • explains clearly how data is used
    • supports processes that manage and enable lawful access to patient data to improve health and social care

Does NHS Digital sell my Data to third parties?

The NHS shares some data, in which nobody can identify you, with trusted third parties, in order to improve the NHS for you and everyone else.

This includes with:

  • NHS planners
  • university researchers
  • scientists researching medicines

We only share data when there is a proven benefit to the NHS, and access is strictly controlled.

You data won’t be shared with

  • Your data is not shared for commercial purposes
  • Your data is not shared with insurers
  • Your data is not sold

Please see our Privacy Notice for further information on how else your data might be shared by the practice.

Summary Care Record (SCR)

Your Summary Care Record is different to the above sharing for secondary uses. Your SCR is used to assist in provision of care for you. Access to SCR information means that care in other settings is safer, reducing the risk of prescribing errors. It also helps avoid delays to urgent care.

At a minimum, the SCR holds important information about;

  • current medication
  • allergies and details of any previous bad reactions to medicines
  • the name, address, date of birth and NHS number of the patient

Additional Information in the SCR, such as details of long-term conditions, significant medical history, or specific communications needs, is now included by default for patients with an SCR, unless they have previously told the NHS that they did not want this information to be shared. There will also be a temporary change to include COVID-19 specific codes in relation to suspected, confirmed, Shielded Patient List and other COVID-19 related information within the Additional Information.

All of our patients who have not chosen to opt out have a Summary Care Record that can be accessed, with the patient’s consent, by hospital and out of hours staff.

You may choose to opt out of having a Summary Care Record. The websites below will help you to decide on the risks and benefits.

https://digital.nhs.uk/services/summary-care-records-scr

If you would like to opt out, please print off and complete the following consent form and return it to the surgery. 

https://digital.nhs.uk/services/summary-care-records-scr/scr-patient-consent-preference-form

National Diabetes Audit (NDA)

Birchwood Medical Practice is taking part in an important national project about people at risk of diabetes and diabetes care and treatment in the NHS. The project is called the National Diabetes Audit (NDA). The NDA has always collected patient identifiable data from health care providers since it began in 2004.

Patients do not need to be individually consented but we want to raise awareness of the NDA.This is known as ‘fair processing’.

If you have diabetes, non-diabetic hyperglycaemia, impaired glucose tolerance or pre-diabetes, your GP practice will share information about your diabetes care and treatment with the NDA. The type of information, and how it is shared, is controlled by law and enforced by strict rules of confidentiality and security.

Taking part in the NDA shows that this GP practice is committed to reducing diabetes and improving care for people with diabetes.

The NDA is a mandatory collection for the NHS. NHS England uses powers under section 254 of the Health and Social Care Act 2012 to direct NHS Digital to collect the data. The information is required by NHS Digital under section 259 of the 2012 Act to comply with the National Diabetes Audit Directions 2017.

In line with section 259, all organisations in England that are in scope of the NDA Data Provision Notice, must comply with the requirement and provide information to NHS Digital in the form, manner and period specified.

Where a collection is directed under this mechanism, the national data opt out does not apply. Therefore, all patients’ records must be submitted to NHS Digital.

This is detailed in section 6.4 ‘When does a national data opt-out not apply?’ of the National data opt-out operational policy guidance document.

NHS Digital is obliged to apply the national data opt out if they supply the data onwards to any other organisation. For example, if a research body applies for NDA data via the Data Access Request Service (DARS) run by NHS Digital, then they are required to apply the NDO preference from the patient to the data before supplying the data extract to the research body. They do this by checking the patient cohort against the national register.