Liverpool Care Pathway - The Terminator

Dotting the 'I's is crossing the 'T's but dotting the Data is crossing the line.




Care.data is back. And it's all got to be sewn up by 2020.

This is Healthcare Efficiency Through Technology –

The controversial Care.data project is set to restart later this month. Information and opt out forms are due to be sent out to patients in one of the pilot areas.

Blackburn with Darwen Clinical Commissioning Group said it will start sending letters at the end of June, with data extraction likely to take place between September and November.

The NHS England led project, which intends to link patients’ GP and hospital records, initially intended to begin extracting data in autumn last year, but the programme has been dogged by concerns about patient confidentiality.

This month the data harvest will resume. The NHS highwayman will come knocking at surgery doors to stand and deliver patient records unless you have taken the time, the trouble and the effort to opt out.

Government policy is that by 2020, in relation to data sharing, the NHS will be consent-based. That is misleading; it is presumed consent that is meant.

Long before a legal ‘Data Protection’ there was honour-bound patient confidentiality. That is all now surrendered to the huge unknowns of the big data-gulper that is Care.data.

Blackburn with Darwen CCG says–

Due to pre-election guidance that the CCG has had to adhere to, no communication with the public has taken place, and GPs have not been able to carry out any formal work on the Care.data programme. However, work has continued within the national programme team and with the four pathfinder areas (Blackburn with Darwen, Somerset, Hampshire, and Leeds) on the review of patient facing materials - such as the Practice Toolkit. CCGs have robust plans for their work programme and for communication with their communities.

Blackburn with Darwen will be ready to start fair processing (the time patients have to make a decision whether to opt out) at the end of June; Somerset and West Hampshire wish to start at the beginning of September. Leeds have not confirmed when they will commence testing communications but are also working towards the beginning of September. A total of 104 practices across Blackburn with Darwen, Somerset and West Hampshire have signed up.

Formal accountability for proceeding with the Programme sits with the SRO (Senior Responsible Officer), Tim Kelsey. No data will be shared until Dame Fiona Caldicott advises she is satisfied with the programme’s proposals and safeguards. Extraction is likely to take place between September and November depending on how fair processing testing communications was conducted. GP systems are currently undertaking the work required for extraction to take place.

Kelsey is NHS England's National Director for Patients and Information.

The Care.data programme will push the NHS towards a ‘consent-based’ model of data sharing by 2020, but 100 per cent security of patient information can't be guaranteed, and the 'SRO', Tim Kelsey, actually concedes no data can ever be absolutely secure.

Society is working toward a position of presumed consent: Presumed consent in organ harvesting; presumed consent in data harvesting.

You; yourself; your information: these do not belong to you, for you are We and the social composite is paramount over self.

Democracy is being turned inside out and on its head. The Communitarian ethos has taken over.

When everything becomes subordinated to a greater folly that is an ill-defined or non-defined ‘greater good’ we risk losing sight of the debt of compassion and service we owe to the individual.

The whole is only ever the sum of its parts. It is the integrity of those parts that defines the whole. We lose sight of that at our peril for in so doing do we sell our souls to serve the Devil that leads the herd.

This is a policy paper, Personalised health and care 2020, from the DoH and the NIB (National Information Board) –

The paper discusses the processes that have driven change in transacting exchange and purchase from paper to virtual transactions online.

Any proposition for closing the gap that is forecast between available resource and predicted demand, assumes significant cash releasing and efficiency contributions from technology and data services – and recent research commissioned to support this framework suggests that the potential cost-saving is substantial.

The paper employs much jargon. Realistically, it is pointing out the gap between expected demand and available supply and how that is to be closed.

In discussing these processes of change, the paper continues:

These processes or drivers of innovation – the changing of consumer behaviour driven by the ability to complete useful transactions and the transfer of skills and costs – require the affected industries to adopt particular and common characteristics.

One compelling characteristic underpinning these processes is standardisation: standardisation of processes, datasets, platforms and interfaces. In some cases the standardisation is formal, with the mandatory adoption of industry-wide standards. In other cases standards evolve through convention and informal adoption. Standardisation enables innovation, reduces development costs, lowers barriers to user adoption, speeds up wide-scale adoption and supports an almost infinite variety of bespoke and personalised service offerings.

The one compelling characteristic is ‘standardisation’.

The paper provides what it considers an illustrative example to support what is being proposed:

In the UK, heart surgeons have shared data on their individual outcomes for the last decade – and mortality rates in some procedures have fallen by a third, with around 1,000 fewer avoidable deaths each year reported. 

The Telegraph  reported -

Surgery death rate 'twice as high as thought'

Twice as many people die after surgery in NHS hospitals as previously thought, according to a new report that finds serious shortcomings in the way many patients are treated.

The overall chance of dying within two months of surgery is one in 28 (3.6 per cent), found the study published today (Fri) in The Lancet.

Dr Rupert Pearse, who led the research, described its findings as “very worrying” and said many patients were simply not getting the care they should. “We need to act,” he said.

Actually, and it should be a no-brainer, but the study published in the Lancet and reported in The Telegraph actually does confirm to be the case that better care means better outcomes.

Patients undergoing specialist surgery are treated differently, for example by dedicated teams on dedicated wards. Dr Pearse argued that meant they essentially received better care.

He said the mortality rate among adult cardiac patients was now less than two per cent - even though they tended to be older, have worse health, and require more dangerous surgery than average.

Cardiac patients are treated by specialist teams of surgeons and anaesthetists and cared for by specialist nurses on dedicated wards.

“If we did the types of things that we did in cardiac surgery, in all types of surgery, outcomes would improve.

“With most surgery, the only thing that’s different is the surgeon. But this ‘one size fits all’ approach to care isn’t really working for the overall surgical population.”

Patients were also being sent back to general wards after surgery rather than critical care beds because of a “one-size fits all” approach that was “ingrained” in the NHS.

Better care from dedicated teams means better outcomes. You don't need a central database for that.

The policy paper pushes for standardisation but the “one-size fits all” approach “ingrained” in the NHS isn't working. The paper highlights bespoke delivery of requirements online in other areas and suggests that this will translate into delivery in the medical field also.

However, whilst hospitals need to improve care for “high risk” patients, such as the very old or those undergoing dangerous procedures like emergency bowel repairs, who account for 80 per cent of deaths, doctors concede that there is simply not the money to provide such a level of care for all patients.

Risk Stratification

This is not risk stratification of data; this is risk stratification of outcomes.

The 'Surprise Question' - the GSF Barton Method - already picks these patients out as subjects for downsized care options and such treatments and procedures are identified as being of limited clinical value.

A relatively small number of patients accounts for a disproportionately large fraction of health care costs. In England, roughly half of all hospital bed-days are attributable to just five per cent of the population.

In that respect, a central unified Health and Social Care database does facilitate identifying this one percent singled out for EoL registers and the five percent of bed blockers and leaves far less to chance.

It does give the client base with the biggest clout, sailing high on the Complete Lives curve, the biggest voice through access and accommodation of need. It's all win all round.

A central unified Health and Social Care database does enable ready identification of particular groups of patients and ready provision of recommended treatments for the group.

Statisticians will be better equipped having access to a vast database to make predictions in real time of likely outcomes and forward projections...

as the climate data given a polish that came out of the University of East Anglia, perhaps.

Bigger does not mean better. What is on the system is only what is entered onto the system. Linked up systems may only provide more rapid contagion of error.

Beware, also, what you enter onto your AD that it will be available to the paramedic first responder.

When ADs are become good practice, DNRs are become practice.

Some further reading -

Liverpool Care Pathway – Joining Up The Dots

Liverpool Care Pathway - The Three Options: A Post-modern Fairytale

Some say that living longer is not the same as living well but in an environment in which cost counts and the alternative is not living at all then what are they saying?

When the impact of treatment is weighed against the impact of cost and is found wanting it is important to consider carefully the implications of what is being said before committing to a policy of treatment denial because treatment is considered of ‘limited clinical value’.

Sympathy, empathy, kindness and care cannot be equated with the taking of life that is Compassion in Dying.

There is always a paper trail, but can that be lost in the digital footprint?

Blog Supplemental –

Liverpool Care Pathway - Threshing The Data

Liverpool Care Pathway - Fracking The Data

Liverpool Care Pathway - It Cast Its Shadow Long

Liverpool Care Pathway - Be Not Disarmed By The Caring Smile

Liverpool Care Pathway - A Data Bonanza

Liverpool Care Pathway - Data Is Power

Liverpool Care Pathway - Still Playing Games Of Consequences