Patient record access in the United Kingdom

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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. British hospitals were slower to move into electronic records. From 1 April 2015 all GP practices in England have to provide online services to patients, including access to summary electronic medical records. [1] [2]

Contents

Legislation

The Access to Medical Reports Act 1988 gave patients the right to see any medical report relating to them "which is to be, or has been, supplied by a medical practitioner for employment purposes or insurance purposes". The Access to Health Records Act 1990 gave them the right to inspect their own records. The Data Protection Act 1998 and the Data Protection Act 2018 apply to medical records as to other records.

Only 3% of GPs in England offered online record access in October 2014 to patients although all of them were expected to by April 2015. [3] EMIS said that the numbers of practices providing patients with online access to their records ‘shot up’ after it allowed GPs to tailor the parts of the record that patients can see. GPs are required from 2015 only to offer patients online access to the medication, allergies and adverse reactions in their summary care record, not to the complete record. [4] Jeremy Hunt announced in September 2015 that all patients will be entitled to read and write to all their NHS health records online by 2018. [5]

Development

Failures to link up medical records held by hospitals and those kept by their family doctors put patient's lives at risk, according to Prof Steve Field of the Care Quality Commission. He says this could be tackled by giving patients access to their own records – a system pioneered, in an attempt to restore patient confidence, by Dr Amir Hannan. Hannan faced a difficult problem when he took over the GP practice formerly held by Dr Harold Shipman, who had murdered several hundred patients. “It was very difficult to recruit to Shipman’s practice because of [the lack of] trust locally. But Amir said, ‘Right from the start I will share everything with my patients, and gave them access to all their own records." "He's got examples of patients being admitted to hospital where they have had to show the consultants their record which may have saved their lives. It's policy to try and make it happen. But it's not moving quickly enough.” [6]

150 patients at the practice were given access to their medical records and test results over the internet in 2007 using a system run by Emis. They could go online to order prescriptions, communicate with their GP or even to print off their medical records to take to appointments with hospital consultants. [7] As of October 2014 the practice had enabled over 3,200 patients - 28% of its total patient population - to have electronic access to their GP record. This level of access has been shown to cut down on appointments by as much as 12% and the number of phone calls made to practices. [8]

Ingrid Brindle, a patient at Hannan's practice, has had online access to her record for over eight years. She said having access to her record was ‘invaluable’ and allowed her and her GP to work together as a ‘team’. ‘The amount of time I don't have to contact the practice is incredible,’ she told GPs at a King’s Fund event. ‘I really don't understand why so little progress has been made. Empowering patients and giving them control over their situation so that they understand when they're making their health choices, to me it's a no-brainer.’ [9]

The NHS England National Information Board produced a document Personalised Health and Care 2020, in November 2014 outlining plans for patients to be able to add comments into their care records from March 2018 and for NHS regulators to take action against trusts failing to hit new technology targets. [10] It was enthusiastically supported by Lord Darzi who argued that interested patients and carers, especially those accustomed to self-management of their condition, should take the lead in creating apps and other means of accessing records that are customised to the needs of patient groups. [11]

Progress has been slow and patchy. Hannan says "If we set a target like 2018 for things to happen, then it will be 2025 before they do.” Professor Chris Ham says: “On the one hand there is a great deal of innovation out there, but we are too dependent on the work of Dr Hannan and others. There is also too much variation, something great can be going on in one area but it can be a completely different story just down the road.” [12]

Scotland

As part of the Scottish Government's 2020 Vision for Health and Social Care, all patients will be given online access to their own health records by 2020. [13]

Impact

Sharing their electronic health records with people who have type 2 diabetes helps them to reduce their blood sugar levels. It is a way of helping people understand their own health condition and involving them actively in its management. [14] [15]

Care.data

Dr Hannan has dealt with the Care.data controversy by placing detailed information and an opt-out form of the practice website about the care.data scheme linked to various information sources including the practice’s understanding, not just the official information provided by NHS England. The practice has had 372 patients opt out using this tool in one week. [16]

Community Services

Both patients and staff of Locala Community Partnerships can use Microsoft Lync. This can be used to offer the patient a virtual assessment. Patients can access Lync through an emailed hyperlink and a clinician can then assess the symptom via video call, reducing the time taken out of the patient’s day. [17]

Hospital records

A system developed for renal patients, Renal patient view, provides online information for kidney patients’ including diagnoses, treatment and latest test results. [18] Almost all renal units in the UK can use this system, and it has been extended to patients with inflammatory bowel disease and diabetes in Salford Royal NHS Foundation Trust. The Scottish Government is funding a pilot for patients with heart failure.

Opt-out

A system for patients to opt out of sharing their personal health data beyond direct care was launched by NHS Digital in 2018 as a response to the care.data fiasco, but by 1 October, only 2,185 people had used it. MedConfidential complained that there had been little publicity for this scheme. [19]

In 2022 the ‘Citizen’s Access Programme’ – giving patients in England automatic access to their prospective GP records through the NHS app was supposed to have been implemented on 1 November, but was delayed, and generated resistance from GPs with concerns about extra workload and distress for patients. [20]

Research

Research funded by the UK's National Institute for Health and Care Research (NIHR) suggests that giving nurses and pharmacists easier access to electronic patient records about prescribing could help people manage their symptoms at home. [21] [22]

Security

There have been IT system failures across primary and secondary care. Guy's and St Thomas' NHS Foundation Trust stopped working for 10 days in 2022. The Northern Care Alliance NHS Foundation Trust IT failure caused weeks of problems. About 1,000 appointments and procedures were cancelled and the cost of ‘managing and recovering’ from the impact was estimated at £675,000. [23] These failures block access to records, preventing clinicians from ordering investigations, restricting service provision, and bringing much healthcare to a halt. These failures are attributed to a lack of attention to NHS IT infrastructure - computers, servers, and networks, and the supporting processes and staff which ensure usability, stability, and security. According to the British Medical Association 27% of NHS clinicians lose more than four hours a week because of inefficient IT systems. [24]

See also

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.

<span class="mw-page-title-main">Family medicine</span> Medical specialty

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, focusing 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.

Cambridge University Hospitals NHS Foundation Trust is a British public sector healthcare provider located in Cambridge, England. It was established on 4 November 1992 as Addenbrooke's National Health Service Trust, and authorised as an NHS foundation trust under its current name on 1 July 2004.

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 principal 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.

<span class="mw-page-title-main">NHS Scotland</span> 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 that make up the National Health Service in the United Kingdom. It operates 14 territorial NHS boards across Scotland, supported by seven special non-geographic health boards, and Public Health Scotland.

Health and Social Care (HSC) is the publicly funded healthcare system in Northern Ireland. Although having been created separately to the National Health Service (NHS), it is nonetheless considered a part of the overall national health service in the United Kingdom. The Northern Ireland Executive through its Department of Health is responsible for its funding, while the Public Health Agency is the executive agency responsible for the provision of public health and social care services across Northern Ireland. It is free of charge to all citizens of Northern Ireland and the rest of the United Kingdom.

<span class="mw-page-title-main">Ara Darzi, Baron Darzi of Denham</span> Armenian-British surgeon (born 1960)

Ara Warkes Darzi, Baron Darzi of Denham, is an Armenian-British surgeon, academic, and politician.

The Clinical Practice Research Datalink (CPRD) is an observational and interventional research service that operates as part of the UK Department of Health. It is jointly funded by the National Institute for Health and Care Research(NIHR) and the Medicines and Healthcare products Regulatory Agency (MHRA). CPRD is working closely with the extensive primary care, topic specific and comprehensive NIHR research networks and with NHS Digital.

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.

111 is a free-to-call single non-emergency number medical helpline operating in England, Scotland and Wales. The 111 phone service has replaced the various non-geographic 0845 rate numbers and is part of each country's National Health Service: in England the service is known as NHS 111; in Scotland, NHS 24; and in Wales, NHS111 Wales.

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.

Healthcare in London, which consumes about a fifth of the NHS budget in England, is in many respects distinct from that in the rest of the United Kingdom, or England.

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. In June 2022 the company was acquired by Bordeaux UK Holdings II Limited, an affiliate of UnitedHealth’s Optum business for a 49% premium on EMIS’s closing share price.

Amir Simon Hannan MBE is an English doctor who works as a General Practitioner in Tameside and has pioneered patients having access and understanding to their Electronic health records in the English National Health Service.

Patient Online is an NHS England programme to encourage GPs deliver the British government’s promise to give patients in England access to their GP records and to let them book appointments and order prescriptions online.

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.

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.

Livi is a digital healthcare service by Kry International AB, a Swedish online healthcare company based in Stockholm. Kry International was established in 2015 and operates as Kry in Norway and Sweden. In France and the United Kingdom, it operates as Livi.

References

  1. ↑ "Access to health records". Medical Protection. Retrieved 13 November 2018.
  2. ↑ "Patient health records: Access, sharing and confidentiality". Patient health records: Access, sharing and confidentiality.
  3. ↑ "Most people don't know they have the right to view medical records online". Guardian. 6 November 2014. Retrieved 30 November 2014.
  4. ↑ "GPs restricting patients' access to online records". Pulse. 25 September 2014. Retrieved 30 November 2014.
  5. ↑ "Hunt: Patients to access entire record online by 2018". Health Service Journal. 2 September 2015. Retrieved 18 October 2015.
  6. ↑ "Failure to join up medical records is a 'health risk', says GP chief inspector". Independent. 2 September 2014. Archived from the original on 6 September 2014. Retrieved 30 November 2014.
  7. ↑ "Web records prove hit with patients". BBC News. 5 February 2007. Retrieved 30 November 2014.
  8. ↑ "Giving patients online records access 'cuts appointment demand by 12%'". Pulse. 3 April 2013. Retrieved 30 November 2014.
  9. ↑ "Electronic access to records will see GPs 'working happier, but harder'". GP Online. 7 October 2014. Retrieved 30 November 2014.
  10. ↑ "Patients to be able to write in their records from 2018". Health Service Journal. 13 November 2014. Retrieved 30 November 2014.
  11. ↑ Darzi, Ara (13 November 2014). "Only patients can unlock the potential of electronic records". Health Service Journal. Retrieved 30 November 2014.
  12. ↑ "Paperless NHS supplement: Technology – instant access". Health Service Journal. 13 March 2015. Retrieved 26 April 2015.
  13. ↑ "Patients to be given online access to their own health records in Scotland by 2020". Scottish Daily Record. 5 March 2014. Retrieved 30 November 2014.
  14. ↑ Neves, Ana Luisa; Freise, Lisa; Laranjo, Liliana; Carter, Alexander W; Darzi, Ara; Mayer, Erik (12 June 2020). "Impact of providing patients access to electronic health records on quality and safety of care: a systematic review and meta-analysis". BMJ Quality & Safety. 29 (12): 1019–1032. doi:10.1136/bmjqs-2019-010581. ISSN   2044-5415. PMC   7785164 . PMID   32532814.
  15. ↑ "Sharing electronic records with patients led to improved control of type two diabetes". NIHR Evidence (Plain English summary). National Institute for Health and Care Research. 21 October 2020. doi:10.3310/alert_42103.
  16. ↑ "Dr Amir Hannan: 'This goes to the very heart of the doctor-patient relationship'". Pulse. 28 January 2014. Retrieved 30 November 2014.
  17. ↑ "Locala community health partnership moves to mobile working". Computer Weekly. 4 September 2014. Retrieved 26 April 2015.
  18. ↑ "Renal patient view (RPV)". Salford Royal Hospital. Retrieved 26 April 2015.
  19. ↑ "Poor uptake of new scheme to give patients control of confidential records". Health Service Journal. 12 October 2018. Retrieved 13 November 2018.
  20. ↑ "What we know (and don't know) about the records access rollout chaos". Pulse. 14 November 2022. Retrieved 14 November 2022.
  21. ↑ "Nurses and pharmacists are key to improving access to end of life medicines for people being cared for at home". NIHR Evidence (Plain English summary). National Institute for Health and Care Research. 15 June 2021. doi:10.3310/alert_46494. S2CID   241904445.
  22. ↑ Latter S, Campling N, Birtwistle J, Richardson A, Bennett MI, Ewings S, et al. (September 2020). "Supporting patient access to medicines in community palliative care: on-line survey of health professionals' practice, perceived effectiveness and influencing factors". BMC Palliative Care. 19 (1): 148. doi: 10.1186/s12904-020-00649-3 . PMC   7517636 . PMID   32972414.
  23. ↑ "Major IT failure that hit four hospitals and affected thousands of patients expected to cost £675k". Manchester Evening News. 8 September 2022. Retrieved 14 November 2022.
  24. ↑ "Failing IT infrastructure is undermining safe healthcare in the NHS". BMJ. 9 November 2022. Retrieved 14 November 2022.
  25. ↑ Investigating Decentralized Management of Health and Fitness Data
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