General Practice Data for Planning and Research

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The General Practice Data for Planning and Research system was set up by the British National Health Service as a replacement for the General Practice Extraction Service as a means of transmitting data intended for use beyond that of providing individual health care. This might include healthcare planning, or research.

Contents

It was announced [1] on 21 May 2021,

It received a cautious welcome for the potential benefits to Health Research, [2] particularly as large scale medical data is providing valuable data on the most effective treatments for Covid-19. [3]

Privacy and implementation concerns

Amongst patients and the general public concerns have been raised about sale of NHS data to private companies. [4] [5]

The Pulse magazine - distributed to general practitioners in the UK, carried articles reflecting concern about the scope of the data being collected [6] and the additional workload and legal risks it would impose on GPs [7]

Responsibility for informing patients was devolved to GP Practices, for example by updating the Privacy Notice on their website. [8] Doctors urged a delay in introduction due to these concerns [9]

Opt out

Patients can out of NHS data sharing at two levels, firstly then can ask their GP not to share data with NHS digital for purposes of research and planning, called a Type 1 Opt Out, and secondly they can opt out of NHS Digital sharing - the National Data Opt Out. [10]

The Type 1 Opt Out was implemented by the patient filling out a downloadable paper form and returning it to their GP,

Implementation delay

The process of making GP data available to NHS Digital for wider use was due to begin on 1 July 2021, but was delayed until 1 September [11]

It has now been delayed until four criteria have been met [12]

  1. the ability to delete data if patients choose to opt-out of sharing their GP data with NHS Digital, even if this is after their data has been uploaded
  2. the backlog of opt-outs has been fully cleared
  3. a Trusted Research Environment has been developed and implemented in NHS Digital
  4. patients have been made more aware of the scheme through a campaign of engagement and communication

Data security and governance

From the GP Data for Planning and Research: Letter from Parliamentary Under Secretary of State for Health and Social Care to general practices in England - 19 July 2021 [13]

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.

We are also committed to adopting a transparent approach, including publishing who has run what query and used which bit of data. We are developing a TRE which will meet our specific needs and act as 'best in class'.

We commit to only begin the data collection once the TRE is in place. Further, we 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.

I can also confirm that 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.

Related Research Articles

General practice is the name given in various nations, such as the United Kingdom, India, Australia, New Zealand and South Africa to the services provided by general practitioners. In some nations, such as the US, similar services may be described as family medicine or primary care. The term Primary Care in the UK may also include services provided by community pharmacy, optometrist, dental surgery and community hearing care providers. The balance of care between primary care and secondary care - which usually refers to hospital based services - varies from place to place, and with time. In many countries there are initiatives to move services out of hospitals into the community, in the expectation that this will save money and be more convenient.

Family medicine is a medical specialty within primary care that provides continuing and comprehensive health care for the individual and family across all ages, genders, diseases, and parts of the body. The specialist, who is usually a primary care physician, is named a family physician. It is often referred to as general practice and a practitioner as a general practitioner. Historically, their role was once performed by any doctor with qualifications from a medical school and who works in the community. However, since the 1950s, family medicine / general practice has become a specialty in its own right, with specific training requirements tailored to each country. The names of the specialty emphasize its holistic nature and/or its roots in the family. It is based on knowledge of the patient in the context of the family and the community, centering on disease prevention and health promotion. According to the World Organization of Family Doctors (WONCA), the aim of family medicine is "promoting personal, comprehensive and continuing care for the individual in the context of the family and the community". The issues of values underlying this practice are usually known as primary care ethics.

General medical services (GMS) is the range of healthcare that is provided by general practitioners as part of the National Health Service in the United Kingdom. The NHS specifies what GPs, as independent contractors, are expected to do and provides funding for this work through arrangements known as the General Medical Services Contract. Today, the GMS contract is a UK-wide arrangement with minor differences negotiated by each of the four UK health departments. In 2013 60% of practices had a GMS contract as their principle contract. The contract has sub-sections and not all are compulsory. The other forms of contract are the Personal Medical Services or Alternative Provider Medical Services contracts. They are designed to encourage practices to offer services over and above the standard contract. Alternative Provider Medical Services contracts, unlike the other contracts, can be awarded to anyone, not just GPs, don't specify standard essential services, and are time limited. A new contract is issued each year.

NHS Wales Publicly-funded healthcare system in Wales

NHS Wales is the publicly-funded healthcare system in Wales, and one of the four systems which make up the National Health Service in the United Kingdom.

NHS Scotland Publicly-funded healthcare system in Scotland

NHS Scotland, sometimes styled NHSScotland, is the publicly funded healthcare system in Scotland, and one of the four systems which make up the National Health Service in the United Kingdom. It operates fourteen territorial NHS boards across Scotland, seven special non-geographic health boards and NHS Health Scotland.

A local medical committee is a statutory body in the UK. LMCs are recognised by successive NHS Acts as the professional organisation representing individual GPs and GP practices as a whole to the primary care organisation. The NHS Act 1999 extended the LMC role to include representation of all GPs whatever their contractual status. This includes sessional GP and GP speciality registrars. The LMC represents the views of GPs to any other appropriate organisation or agency.

National Health Service (England) Publicly-funded healthcare system in England

The National Health Service (NHS) is the publicly funded healthcare system in England, and one of the four National Health Service systems in the United Kingdom. It is the second largest single-payer healthcare system in the world after the Brazilian Sistema Único de Saúde. Primarily funded by the government from general taxation, and overseen by the Department of Health and Social Care, the NHS provides healthcare to all legal English residents and residents from other regions of the UK, with most services free at the point of use for most people. The NHS also conducts research through the National Institute for Health and Care Research (NIHR).

SystmOne is a centrally hosted clinical computer system developed by Horsforth-based The Phoenix Partnership (TPP). It is used by healthcare professionals in the UK predominantly in primary care. The system is being deployed as one of the accredited systems in the government's programme of modernising IT in the NHS.

A Summary Care Record (SCR) is an electronic patient record, a summary of National Health Service patient data held on a central database covering England, part of the NHS National Programme for IT. The purpose of the database is to make patient data readily available anywhere that the patient seeks treatment, for example if they are staying away from their home town or if they are unable to give information for themselves. Despite opposition from some quarters, by September 2010, 424 GP practices across at least 36 primary care trusts had uploaded 2.7 million Summary Care Records. On 10 October 2010, the Health Secretary announced that the coalition government would continue with the introduction, but that the records would 'hold only the essential medical information needed in an emergency – that is medication, allergen and [drug] reactions'. By March 2013, more than 24 million SCRs had been created across England.

Clinical commissioning group

Clinical commissioning groups (CCGs) are NHS organisations set up by the Health and Social Care Act 2012 to organise the delivery of NHS services in England. The announcement that GPs would take over this commissioning role was made in the 2010 white paper "Equity and Excellence: Liberating the NHS". This was part of the government's stated desire to create a clinically-driven commissioning system that was more sensitive to the needs of patients. The 2010 white paper became law under the Health and Social Care Act 2012 in March 2012. At the end of March 2013 there were 211 CCGs, but a series of mergers had reduced the number to 135 by April 2020.

The Phoenix Partnership UK based IT company

The Phoenix Partnership (Leeds) Ltd (TPP) is a software company based in Horsforth, Leeds. It develops and supplies clinical software including SystmOne.

care.data was a programme announced by the then Health and Social Care Information Centre in spring 2013. It aimed to extract data from GP surgeries into a central database through the General Practice Extraction Service (GPES). Members of the English population who were registered with GP practices were informed that data on their health would be uploaded to HSCIC unless they exercised their rights to object by informing their GP.

Out-of-hours services are the arrangements to provide access to healthcare at times when General Practitioner surgeries are closed; in the United Kingdom this is normally between 6.30pm and 8am, at weekends, at Bank Holidays and sometimes if the practice is closed for educational sessions.

Patient record access in the United Kingdom has developed most fully in respect of the GP record, because computerisation in that field is almost universal. Many British hospitals still use paper records. From 1 April 2015 all GP practices in England have to provide online services to patients, including access to summary medical records.

EMIS Health, formerly known as Egton Medical Information Systems, supplies electronic patient record systems and software used in primary care, acute care and community pharmacy in the United Kingdom. The company is based in Leeds. It claims that more than half of GP practices across the UK use EMIS Health software and holds number one or two market positions in its main markets.

Healthcare in the West Midlands is now the responsibility of five clinical commissioning groups (CCG): Birmingham and Solihull; Sandwell and West Birmingham; Dudley; Wolverhampton; and Walsall.

The General Practice Extraction Service was a British health service outcomes research computer database that collates statistical aggregated data from individual medical records of GPs in England, for purposes independent of an individual's immediate health, such as public health research. It may conflict with sensitive medical confidentiality. It is similar to bioinformatics, epidemiology, and a health information exchange.

GP Federations became popular among English general practitioners after 2010 as a means to exploit the opportunities - or mitigate the threats - posed by the Five Year Forward View proposals in the English NHS which envisaged delivering primary care at a larger scale than the traditional GP list. It is widely believed that ‘Practices cannot survive on their own – they have to look at ways of making themselves stronger.’ 15 sites were selected in December 2015 to test new enhanced primary care models serving populations of 30,000 to 50,000 patients. Some, but by no means all, clinical commissioning groups have given financial support to encourage the formation of federations.

The NHS App allows patients using the National Health Service in England to book appointments with their GP, order repeat prescriptions and access their GP record. Available since late 2018, the app was developed by NHS Digital and NHS England. The Health ministers Jeremy Hunt and Matt Hancock both stressed their support for the project. Hancock presented it as the key a radical overhaul of NHS technology. Hunt claimed it would mark 'the death-knell of the 8am scramble for GP appointments that infuriates so many patients'.

In 2005 the National Health Service (NHS) in the United Kingdom began deployment of electronic health record systems in NHS Trusts. The goal was to have all patients with a centralized electronic health record by 2010. Lorenzo patient record systems were adopted in a number of NHS trusts. While many hospitals acquired electronic patient records systems in this process, there was no national healthcare information exchange. Ultimately, the program was dismantled after a cost to the UK taxpayer was over $24 billion, and is considered one of the most expensive healthcare IT failures.

References

  1. ↑ "NHS Digital announcement of GPDPR" . Retrieved 8 August 2021.
  2. ↑ Toynbee, Polly (11 June 2021). "Why I back the NHS patient data-sharing plan". The Guardian.
  3. ↑ "Coronavirus (COVID-19): Special Collections" . Retrieved 8 August 2021.
  4. ↑ "NHS data sale 'an invasion of privacy', campaigners say". BBC News. Retrieved 6 August 2021.
  5. ↑ Malik, Kenan (6 June 2001). "Tell me how you?ll use my medical data. Only then might I sign up". The Guardian.
  6. ↑ "New GP data extraction 'far exceeds' care.data plans, warn privacy campaigners". Pulse Magazine. 24 May 2021. Retrieved 8 August 2021.
  7. ↑ "Big Brother's big data grab: GPs caught up in patient records controversy". Pulse . 2 July 2021.
  8. ↑ "General Practice Data for Planning and Research: GP Practice Privacy Notice" . Retrieved 8 August 2021.
  9. ↑ "Doctors urge delay to England GP data scrape". 7 June 2021.
  10. ↑ "General Practice Data for Planning and Research: NHS Digital Transparency Notice". NHS Digital.
  11. ↑ "New NHS patient data store delayed by two months". BBC News. 8 June 2021.
  12. ↑ "GP Data for Planning and Research: Letter from Parliamentary Under Secretary of State for Health and Social Care to general practices in England - 19 July 2021". NHS Digital. 19 July 2021.
  13. ↑ "GP Data for Planning and Research: Letter from Parliamentary Under Secretary of State for Health and Social Care to general practices in England - 19 July 2021". NHS Digital. 19 July 2021.
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