User Needs

User Needs

Several User Needs have been identified, including Primary Care, NHS England, Public Health England and NHS Improvement. There was also a Secretary of State announcement in October 2018 and the Carter report from 2016.

Primary Care

Background

PMIP was the project that introduced universal electronic delivery of certain pathology results to UK GPs in the mid 1990’s. It has two core subcomponents:

  • A Pathology Bounded Code List (PBCL) - a fixed list of 3,352 orderable blood tests originally curated jointly with the Royal College of Pathologists. It is coded against a subset of the READ codes, a legacy standard clinical terminology whose maintenance ended in April 2016. The PBCL is therefore now necessarily static: no new tests can be added to it
  • EDIFACT - a text based but non-SGML electronic data interchange standard approved by ISO in 1987. Still widely used in many industries.

PBCL codes identify the named/coded parts of some lab results that are sent electronically back to primary care from labs. Coverage is restricted chiefly to mainstream blood sciences and so excludes e.g. microbiology and histopathology. Following several prior years of PMIP design work, EDIFACT was adopted circa 2003 for use in transfer of Pathology/Laboratory messages from labs to primary care. It has since been used to carry mostly lab results to primary care, but has also been extended for use for use in Cancer Outcomes Services Dataset. The current PMIP-EDIFACT specification can only carry READ codes, and this is therefore a problem since no new READ codes - and therefore no new tests - can now be added to the PBCL.

Whilst the EDIFACT part of the PMIP specification could technically be uplifted to also carry SNOMED CT codes instead of only the legacy READ codes, the cost of such an upgrade would not be insignificant systems that would need to be upgraded are old and based on dated technology. EDIFACT in itself is an older technology that would not necessarily meet all the future needs of NHS, when the rest of the world has moved to modern paradigms like Representational State Transfer Application Programming Interfaces (REST APIs) based on JSON. So this current estate based on PBCL & EDIFACT is to be replaced by a similar combination of: a curated Unified Test List drawn from SNOMED and with a broader scope (e.g. including microbiology); and a messaging syntax based on HL7 FHIR.

Current Work

This work is currently being investigated by the CCIO7 Basic Pathology programme. Instead of adopting a like for like replacement of the existing estate, this programme is driven by user needs on the ground, a non-exhaustive list of which includes:

  • Clinical Need - The ability to share basic pathology results across health and care
  • Accounting/Commissioning - The ability to unambiguously identify tests and associated results to support commissioning and accounting
  • Patient Safety - The ability to interpret and analyse aggregated lab results where the same test can be returned to clinician in more than one unit of measure

Public Health England

Public Health England (PHE) is an executive agency of the Department of Health and Social Care in the United Kingdom that began operating on 1 April 2013. Its formation came as a result of reorganisation of the National Health Service (NHS) in England outlined in the Health and Social Care Act 2012. PHE's mission is "to protect and improve the nation’s health and to address inequalities".

PHE has a number of divisions, one of which is Contagious disease surveillance and control.

  • Infectious diseases remain an important cause of morbidity and mortality and it is vital that PHE are able to monitor trends in these so that they can respond at an early stage to the threats posed by them and implement control measures early
  • This has to be done through surveillance, but there are very significant challenges to performing this surveillance
  • PHE receive data from multiple sources- standards for coding and communication reduce the time trying to manage translation
  • The Second Generation Surveillance system (SGSS) is PHE’s main surveillance system for infectious disease monitoring
  • SGSS codes are historically based on an old version of SNOMED but PHE’s current focus is migrating to SNOMED CT
  • PHE need to be able to link SGSS data to other key clinical and social care datasets to be able to drive new insights into causes of disease which might then be amenable to intervention
  • SGSS has good coverage across England, and automated daily reporting from pathology laboratories allows rapid response to adverse trends however

There are significant challenges due to lack of a standardised coding system used in reporting laboratories. Although there are standard reporting guidelines, these hold no mandatory force and as a consequence, there is lots of variation in reporting.

Implications

  • A lack of standardised coding in Pathology Laboratories leads to huge variation in data quality and coverage- laboratories are interpreting what to report differently which makes it difficult for PHE to accurately interpret exceedances
  • Translation is required for data incorporation into the national database.

A lack of standardised coding is costly, prone to error, delays collation and may impact on public health response which may have safety implications

NHS England

With new models of care emerging and evolving, there is a clear need for more effective information sharing between care settings, organisations and geographies, as well as between professionals and citizens, to optimize patient outcomes and quality of care. This is reliant on the ability of IT systems across health and care to be interoperable with one another and is key to the delivery of the future vision of care in England.

Dr Simon Eccles is the Chief Clinical Information Officer (CCIO) for Health and Care. The role spans the Department of Health and Social Care, NHS England, NHS Improvement and the arms-length bodies. He is accountable for delivery of the Personal Health and Care 2020 programme, and the whole of the central NHS IT expenditure. One of his 7 main priorities is to enable the sharing of basic Pathology tests and results across the NHS

  • NHS Number
  • Staff ID
  • Observations
  • Medications
  • SNOMED and dm+d
  • Dates and scheduling
  • Basic pathology.

NHS England Workstream related to this priority has high level support from the Secretary of State for Health who is keen to ensure that standards and interoperability are seen as key for the health and social care system.

Aim

  • The aim of this workstream is to ensure that Basic Pathology test results are made available across care settings regardless of who placed the original request.

Benefits

There are a number of benefits this enables:

  • A reduction in duplicate testing
  • A reduction in the variation in testing
  • An improvement in access to test results, with results made available to the right person at the appropriate time.

Deliverables

  • Establish a set of codes that can be used to uniquely identify tests requests and results that are requested/ordered in basic pathology (blood sciences & clinical chemistry)
  • Establish initial requirements for managing updates to national catalogue of tests and associated data standards
  • Establish data models and associated informatics principles required for unambiguously communicating and interpreting requests and results in basic pathology
  • Establish message profiles that are required to share basic pathology results (& requests) containing the codes and data models mentioned above
  • Establish a vendor working group to drive implementation from suppliers (future phase)
  • Establish architectural patterns and components required for seamless sharing of basic pathology results across various settings (future phase).

NHS Improvement

  • Networks require a high degree of interoperability, standardised messaging and test codes
  • Digital Pathology (not just Cancer and Genetics….) will need the ability to work from anywhere for anyone, especially the patient
  • Support progress at pace, as IT can be deployed in advance of physical re-location 
  • UK PLC is working towards a digital future that needs interoperable IT
  • Better use of England’s (and the UK’s) expertise, supporting better training, access to sub-specialists, and national expertise without creating new capacity – Network to Network communication

 

In June 2019, NHS England and NHS Improvement’s National Pathology Optimisation and Delivery board identified IT requirements for establishing and implementing the 29 Pathology Networks across England including the minimum set of standards to ensure interoperability as end to end systems are deployed. 

They wrote to all Trust CEO’s and Financial Directors to provide guidance stating “it is therefore mandatory that all systems purchased and deployed into the NHS going forward meet the following standards for requesting, reporting and communicating diagnostic test results: 

1) SNOMED CT (Systematized Nomenclature of Medicine -- Clinical Terms)  

2) FHIR (Fast Healthcare Interoperability Resources) message standard.  

3) Open access of systems - No restrictions on connections and interfacing between clinical systems” 

 

 

NHSX

NHSX is an organisation within NHS England for the commissioning of digital products and services and is NHS Digital's new unified cohesive commissioner. NHSX brings teams from the Department of Health and Social Care, NHS England and NHS Improvement together into one unit to drive digital transformation and lead policy, implementation and change.

NHSX will deliver the Health Secretary’s Tech Vision, building on the NHS Long Term Plan

Interoperability, information standards and supporting the use of new technologies are some of the Organisations top priorities. These priorities are closely aligned with NHS Digital's Pathology and Diagnostics work:

Setting standards

  • Developing, agreeing and mandating clear standards (for example, on user experience, open standards, information governance, and open source) for the use of technology in the NHS
  • Making sure that NHS systems become interoperable and that the NHS can incorporate the latest innovations without breaking the technical plumbing underneath

Driving implementation

  • Helping to improve clinical care by delivering agile, user-focused projects
  • Developing digital care pathways and solving administrative challenges across the NHS
  • Delivering APIs and documentation to empower developers and data analysts across the NHS and the health tech industry
  • Driving digital and tech maturity in local NHS organisations

Radical innovation

  • Supporting the use of new, emergent and effective technologies by the NHS, both by working with industry and through its own prototyping and development

Lord Carter Report

Lord Carters report in 2016 highlighted the need for the NHS to improve efficiency and improve patient care by standardising procedures and working more closely together.

Getting It Right First Time (GIRFT)

GIRFT is a national programme, led by frontline clinicians, created to help improve the quality of medical and clinical care within the NHS by identifying and reducing unwarranted variations in service and practice.