I’ve been figuring out the technical environment which exists today around end of life care in England. It’s a tangled structure of abbreviations, and mysterious organisations which are hard to track down information about online.
Nonetheless, I think we’ve uncovered some useful context! It’s important to note that there’s a mixture of both ‘palliative care’ and ‘end of life care’ terms, and perhaps folks have different definitions of these. We’ve been thinking of ‘end of life’ as ‘the last year of life’, which is a reasonably well used definition but obviously can be hard to determine in practice as it is rarely evident when someone is entering the last year of life. Some documents use ‘end of life’ to mean the last hours and days only. “Palliative care” often applies at end of life, but patients can receive palliative care when treatment is still underway and recovery may happen (and so it is not end of life). Palliative care may include carers and family as well as the main patient; it is holistic care, incorporating psychological, social and spiritual support. So our project is about the last phases of life, and we are also thinking mostly about the elderly, rather than (younger) cancer sufferers (where the care environment can be quite different).
There are many organisations that seem to do bits of this work or whose websites have information about these topics, even just in England, which is where we are focussing. I wasn’t planning on researching these in depth, but it turns out that you need a good sense of the organisational landscape to be able to figure out what documents are authoritative, and of course to have conversations with clinicians and other folks in the sector! A tiny sample:
NHS England leads the NHS, setting priorities and direction for the rest of the NHS, and informing national debate. They commission contracts for GPs, pharmacists and dentists, and support local health services lead by groups of GPs called CCGs:
Clinical Commissioning Groups, or CCGs, organise delivery of NHS services in England. They are organised by region and are overseen by NHS England, and there’s 211 of them. They operate by purchasing or commissioning healthcare services – including community health, emergency care, hospitals and ambulances and so on. CCGs get to make choices about care and the technologies supporting care, so they are relevant for our work. Here’s an interesting fact: in 2015, there were around 53,000 contracts between the NHS and private sector organisations, including 15,000 primary care contracts held by CCGs. (Thanks to the Centre for Health and the Public Interest!)
then there are groups like the Healthy London Partnership, which delivers 13 transformation programmes to make London the healthiest it can be, which include topics as diverse as homelessness, interoperability, cancer and personalisation. London has 32 clinical commissioning groups, and the Healthy London Partnership also works for Public Health England, NHS England, the London Councils, and the Mayor of London. That is a lot of stakeholders to manage…
Public Health England (an executive agency of the Department of Health, in other words a bit of the Department of Health but with wholly separate management and budget) works to improve health and wellbeing, and reduce health inequalities, which is very relevant for our work.
The Health and Social Care Information Centre (HSCIC) is described as “The national provider of information, data and IT systems for health and social care.” Their work includes collecting and managing health and care information, creating rules about information management and governance, developing metrics and helping organisations manage their health and care data – meaning all kinds of services and standards, some of which we’ll hear about later on, but also things like information sharing for child protection, bureaucracy, GP IT systems, and NHS Email. This incorporates a digital delivery centre http://systems.hscic.gov.uk/ddc to actually build systems.
the National information Board “puts data and technology safely to work” for citizens around health and care, involving NHS, social care, clinical science and local government to develop strategic priorities for data and technology.
Code4Health — a programme run by NHS England to enable digital systems and technology to be best used to deliver quality care. They organise communities around particular interests and topics, help folks learn about digital technologies and creating software, and support open source projects for health and care.
The Apperta Foundation – a non-profit organisation created to support open source and open standards around digital health and social care. They are just getting started, but it’s good to see thought being given to long term support to ensure open source projects are effective in this sector.
The Care Quality Commission (CQC) is the independent regulator for health and social care in England, and provides recommendations and information about end of life care.
NHS Improving Quality, an initiative which has been active in end of life care, is now the Sustainable Improvement Team in NHS England, supporting change and improvement. End of life care remains an activity theme, and they produced a ‘how to’ guide-type report on transforming end of life care in acute hospitals in December 2015.
NHS Alpha, a user-centric prototyping and development team, set up as a joint initiative of the Department of Health, NHS England and HSCIC. Their focus is on creating a vision for NHS.UK, an improved central online service (currently known as NHS Choices, and mostly about basic local services such as getting a GP appointment).
CoordinateMyCare (CMC) is a commercial EPACCS solution, currently deployed in most of London. (CMC seems to go beyond EPACCS in some way, and is supported with training programmes, etc) There are other EPACCS solutions, but this one gets discussed more and we’re working with partners in London, so it’s worth a mention.
There’s a coalition of 21 organisations known as the Leadership Alliance for the Care of Dying People (LACPD) which is often referred to as an authority, but seems to have no web presence I can find other than https://www.gov.uk/government/policies/end-of-life-care
On to the technical side!
First of all, we hear a lot about the summary care record (SCR) and the electronic palliative care coordination system (or possibly systems), EPACCS. We were interested in these as it seemed they might be existing data standards and records which we could use as the basis for a prototype, demonstrating a path to adoption by showing that our new ideas could fit with existing well understood systems which have received significant investment (in money as well as time and energy).
The SCR is a record which is created and maintained by GPs, containing information such as medications (both past and current), allergies, and so on. It’s often a big text file, which can be hard to read (although it seems GPs are used to scanning them to find what they need). The SCR is “like post-it notes for GPs,” a chronological record of what is going on with a patient. If this sounds intriguing, have a look at this example SCR.
As well as GPs, other healthcare workers can read the SCR if they need to when providing urgent or emergency care to patients, and they do so via the NHS Spine. (The name “Spine” sounds like a clearly ordered and simple structure, but in fact it is a collection of applications, systems and directories, that connect national and local NHS systems in various ways. The NHS Spine includes demographic information for 80 million citizens, as well as national applications such as the Summary Care Record and the Electronic Prescription Service.) So, authorised roles such as A&E staff have access via a smart card to the SCR and can find out what the GP has recorded about the patient. These people don’t get to edit the SCR (as I understand it) – only the GP does that. All access to the SCR is recorded and can be audited. The smart card is part of the HSCIC Care Identity Service which uses two factor authentication to identify care workers. The SCR can be used to help clinical staff and carers understand a patient’s medical history, such as to help inform a GP if you visit one when away from home, for out of hours (OOH) care services and urgent care services other than hospitals, for various community care services, hospital pharmacies, acute assessments and admissions at hospitals, A&E, ambulance services and 111.
The SCR is a standard structure for information, and there are several different software applications which can be used to access it. GP surgeries, for instance, may use TTP SystmOne, or EMIS, or other platforms, for their work of reading and adding to the SCR. The data standard for the SCR has changed over the years. In 2013 version 2.1 came out, which enhances the functionality of the SCR by allowing other optional information to be included. If both the patient and the GP agree to this, the SCR can also include information about the management of long term conditions, end of life or mental health care plans, specific information about the patient’s understanding of their condition and their expectations, and so on. This extra information can also include the reasons why a specific medication has been given (which surprised me, as it seems like an obvious thing you would want a record of!), vaccinations, significant diagnoses such as diabetes, major procedures carried out such as joint replacement, and key contact details for family members or others who might need to be involved in care in the future. The end of life information which can be included has a special format – the National End of Life Care dataset ISB 1580. This is nice as standard data formats would help us design new systems to fit in with what is out there, and design work around what information is needed has been done already.
So – as long as both patient and GP agree, the SCR can contain this extra information; if this is the case, the patient’s “SCR consent code” is set to “Express consent for core and additional Summary Care Record dataset upload,” and then the extra information is included and automatically updated in the NHS Spine. This extra information can come from different places automatically (such as significant medical history in the GP’s records) or manually if the patient consents to it. There are some extra bits of privacy control in there, where “Sensitive coded items” are automatically excluded, and patients can decide whether or not to have additional information included and can change their mind at any time. GPs are encouraged to think about talking to patients with a view to getting permission for this extra information, for instance at moments such as flu clinics, when the benefits of this shared information can be discussed.
This all starts to sound straightforward, but it isn’t quite that easy. This extra information in SCR v2.1 isn’t available everywhere yet because it depends what software the GP surgery is using. Sites using TPP already have this function; sites using Emis were supposed to have it by the end of 2015, and that would only provide 80% coverage of GP practices. Presumably other sites using other systems will get it at some point.
So, what about EPACCS? People use “EPACCS” to refer to both a dataset (or standard) and a software platform. It is a separate system from the SCR, and is all about palliative care.
First of all, consider the data standard. There is a national information standard, the Palliative Care Coordination core content standard, known as SCCI1580 and formerly known as End of Life Care Co-ordination: Core Content, which specifies the information needed for coordinated care, with structures and definitions for this data. This standard is mainly intended for use with EPACCS systems. Encouragingly as well as a data standard there are guidelines for implementation and record keeping processes, and also for data governance.
Like for the SCR, there are multiple different EPACCS software systems, which different organisations are rolling out in different ways. Who chooses and deploys an EPACCS? It’s the responsibility of the Clinical Commissioning Groups, and they may work individually or in partnership with others or each other. Sometimes, rarely it seems, a region attempts to coordinate it’s EPACCS system work, such as the North West where there’s a specific individual or initiative trying to join the dots. From a survey in 2013, it was noted that in a quarter of CCGs with systems planned, multiple EPACCS technical systems would be used. EPACCS systems are not just about the software; we need to think about who is using them, how they are trained or incentivised to use them, and so on. There are targets for EPACCS deployment across England but they seem poorly described, and I am not sure what progress is like. Anecdotally, we’ve heard clinicians say that information in EPACCS which is supposed to come from patient and family is not always complete or accurate or up to date, and although the information can be recorded by clinicians, it’s not always so easy for others, such as a patient, to access it. We should bear in mind the targets from the National Information Board, that by 2020 all NHS-funded service health records should be digital, interoperable and up to date in real time for sharing, and that patients should be able to add their own comments and preferences to their care record. So there’s work still to be done.
There’s also a review being carried out into EPACCS now. There was a “value for money” style review after the rollout in England began, and this is a deeper exploration, which hopes to have at least a draft report in Q1. Something to look forward to!
We’ve also come across a lot of references to care plans. These seem especially mysterious and perhaps aren’t a single standard thing at all. The NHS developer site says that there’s no standardised or agreed definitions of what a care plan is, but as care plans appear in different places it’s useful to have some idea what they might include. A care plan relates to a single individual and supports decision-making around future care for that person, such as their preferred place of care, preferred place of death, and who to contact in case of urgent care (both clinicians and other carers). It may also include a record of decisions already made. It’s not a patient record, or a care “pathway”. There are variants of “care plan” such as a treatment care plan or an Advance Care Plan (ACP) (which sounds similar to an advance statement, below).
The idea of EPACCS is that there will be greater coordination and communication across sectors involved in care, so that these vague and disparate care plans are either incorporated into a single document, or possibly that they are coordinated and connected but separate.
There are also special kinds of statement which a person can make around specific aspects of care. For example, the Advance Directive (or Advance Decision, which appears to be a more recent term), which is legally binding, and the Advance Statement (which is not legally binding). Advance Decision is really short for Advance Decision to Refuse Treatment (ADRT), and is a formal document setting out what treatments the patient wishes to refuse in advance and in what settings. The Advance Decision must be prepared in a formal way and signed and witnessed. Clinicians often refer to a DNACPR (do not attempt cardio pulmonary resuscitation). One interesting thing we have learnt is that in an urgent care setting where CPR is an option, clinicians may seek to see an original paper DNACPR/Advance Decision, and may not respect such documents in a digital or paper copy form! Advance Decisions need to be valid at the time they are made (for instance that you are over 18, and mentally capable), and also at the time they are used, for instance considering whether you have indicated that you have changed your mind since you signed the document. Advance statements are less formal in their preparation and include preferences around where you would like to be cared for, spiritual preferences, personal care preferences (such as a shower rather than a bath), and practical matters such as pet care.
EPACCS includes Advance Decisions/Directives, DNACPR, and advance statements, so that’s a mixture of legally binding declarations and informal ones.
On top of this there are companies providing technical solutions which we haven’t fully explored. For example, Adastra is an EPACCS system from Advanced Health and Care, who also provide hospice management software; Adastra appears to have a particular focus on unscheduled, out of hours care. It is also described as an End of Life Care Register (EOLCR). TPP, who produce the SystmOne SCR platform, have modules to support palliative care, care homes, and other needs. The palliative care module is designed to enable easy sharing between “voluntary organisations” (presumably hospices?) and the NHS, and also offers support for other hospice functions such as bed management, medicine control and financial planning. This mentions EPACCS – “record EPACCS preferences using Read codes and free-text notes” – but this is clearly only one minor feature among many.
Also there are new systems being developed which may help untangle it all. For example, HSCIC is creating a Messaging Exchange for Social Care and Health (MESH) which it is thought could be used for other clinical correspondence too. There are also other infrastructure systems, not dedicated to end of life care but which may provide useful functionality for us to build off, such as identity platforms. More on them in future posts!
I hope what we’ve learnt is accurate, but please get in touch if we’ve got anything wrong! We like to learn