Releasing patient information from the ‘X-Files’ for regional care

From joining up care across regions to NHS cyber-attack resilience, and even opening ‘the X-Files’ for mental health, InterSystems’ Joined-Up Health & Care 2017 heard it all

Parallels are not often drawn between the life-saving efforts of the NHS and the supernatural investigations of the fictional FBI agents Mulder and Scully.

But, with speakers ranging from renowned characters like Dr Ben Goldacre, through to think tanks and those at the forefront of connecting the UK’s health and care services, Joined-up Health & Care 2017 provided insights and truths worthy of exposure.

We know there is useful information that could help us treat the patient in front of us, but yet it is unobtainable

The annual conference, hosted by InterSystems at The Belfry, had even-stronger meaning than when delegates gathered 12 months earlier to demonstrate ways in which genuinely joined-up health and care could be achieved.

Mark Palmer, country manager for InterSystems in the UK and Ireland, highlighted how at the centre the establishment of global digital exemplars (GDEs) and sustainability and transformation plans (STPs) had created a national impetus around digital maturity and integration.

But it would be the frontline stories of NHS and care technology in action that would deliver the most-meaningful and sometimes-passionate debate on what joined-up care really means.

Dr James Reed, a consultant forensic psychiatrist and chief clinical information officer at Birmingham and Solihull Mental Health NHS Foundation Trust, told delegates it was time to ‘open the X-Files’, especially when it came to mental health data.

“Everywhere around us there are these mysterious unexplained files that GPs hold, that other hospitals hold, that other health providers hold, which might as well be locked away in an FBI building because there is really no way we can get our hands on them.

“We know there is useful information that could help us treat the patient in front of us, but yet it is unobtainable.”

With many organisations trying to strike the balance between privacy and making important information accessible, mental health is one area where information continues to be treated with extra sensitivity.

“Often you hear people talk about mental health data in hushed tones, as if there is something special, or secret about it,” said Reed.

“As a psychiatrist, I have always felt it is a complete misrepresentation. I don’t see mental health data as being any different than any other type of health data. I don’t think information about one’s schizophrenia or depression is different in any way, or any more sensitive or difficult as information about your cancer or diabetes.

“Psychiatrists haven’t helped this over the years, but if we make out our data needs to be kept secret, that disadvantages the patient because all the other professionals involved don’t have access to it. More broadly, it disadvantages the system of care.

“I am keen on sharing the data, whatever your diagnoses so that all health and care professionals involved get to see it.”

His organisation is now working as part of the MERIT vanguard, an alliance of NHS trusts in the West Midlands working in partnership to transform the way acute mental health services are provided, with an aim of establishing a common mental health record across the region.

To be based on InterSystems HealthShare technology, this record, he said, might not stop at mental health, but could extend to involve acute and GP information, with a reach across the West Midlands, paving the way for joined-up care not only regionally, but possibly nationally.

But, to achieve this, mindsets around mental health data need to change.

Often you hear people talk about mental health data in hushed tones, as if there is something special, or secret about it. I don’t see mental health data as being any different than any other type of health data

“If you are sick with a broken leg everyone gathers around you,” said Reed. “If you are sick with depression, everyone abandons you.

“We shouldn’t play into that by trying to make out mental health data is different – that reinforces the stigma.”

The cancer capital of Europe

David Walliker told the conference of the very real implications of ‘disjointed’ care and the need for information flows across health economies.

“Liverpool is the cancer capital of Europe,” said the chief information officer, whose role extends across two trusts in the city.

“If you get cancer in Liverpool you are more likely to die [as a result] than anywhere else in the country.” p>

Effective use of data is now seen as a key tool in moving Liverpool beyond this situation, and in addressing other significant variances in the region.

The ability to harness data for more-effective care is certainly picking up pace.

The Royal Liverpool and Broadgreen University Hospitals NHS Trust, which was named as a global digital exemplar by NHS England, along with neighbouring fast follower trusts is gearing up to deploy interoperable and digitally-advanced systems in the near future.

In particular, Walliker told delegates why the trust’s new electronic patient record (EPR), InterSystems TrakCare, could not be deployed soon enough.

The event attracted a wide range of speakers exploring how information can be used to improve health and social care services

Not only will this mean that the current challenges of maintaining 76 different clinical systems would come to an end, as they could be turned off, but that there will be a single patient record across 75% of adult activity.

“This is one of the few projects where I have got consultants asking me to do this quicker,” he said.

“They are desperate to have it in. They can see the power of what we can deliver with it.”

With ambitions to reach the equivalent of stage 7 of HIMSS digital maturity rating by April 2020, it was part of a strong programme of activity to make information accessible and meaningful.

For Walliker, meaningful also meant thinking about flows of information with other providers in Liverpool – there was ‘no point spending money on making the Royal better and ignoring outside of the hospital walls’.

It is scarily impressive what you can do with the right data – but you need people with the headroom to develop the right ideas

Even inside the hospital there were new revelations to be had for clinical informatics by thinking beyond traditional boundaries.

A sepsis tool developed in Royal Liverpool and Broadgreen had the potential to save as many as 200 lives per year. But Walliker told the event that this was only developed by drawing on internal resources he had never previously considered.

“We had a large high-quality resource in the hospital, in my development team whom we did know about and medical physics whom, if I'm honest, I didn’t know was there.

“They are the most-ridiculously-clever people. We are now tapping into that resource for our digital transformation as bringing them together with my developers is a dream ticket.”

“It is scarily impressive what you can do with the right data – but you need people with the headroom to develop the right ideas,” he added.

A battleground

Walliker’s observation resonated with opening remarks form Palmer – that there was now a ‘battleground for skills’ in the push for digital.

On the one hand skills were needed to deal with real and immediate threats.

Ken Mortensen, InterSystems’ data protection officer, reminded delegates of the need to ‘deal with the unexpected’.

The NHS cyber attack earlier this year meant that words from data protection officers were now being listened to, he said.

And resilience against cyber attacks, and the ability to secure data, is needed for trust.

“If we don’t have the trust of patients we are unable to deliver effective service or effective care,” he said.

But, dealing with cyber attacks is about more than skills.

For Graham Evans, paperless was a step too far in a world where threats like this are encountered.

As chief information and technology officer, he has overseen the go-live of TrakCare at North Tees and Hartlepool NHS Foundation Trust, and told the event that ‘the more digitally dependent we become, the higher the cyber security risk could become’.

He said: “My view would be that paperless is possibly a step too far. If we can get to very paper-light that would be really useful, mainly because in the event that something occurs such as a major cyber incident, something as simple as a piece of paper can help you through.”

Meaningful data tools

Bestselling author, campaigner, academic, and medical professional, Dr Ben Goldacre, challenged the conference surrounding an over acceptance in the media of correlations in data, coincidence and actual causation.

He also warned that academia had to do more to make their authoritative studies meaningful to frontline of the NHS.

“We have lots of data in the NHS, but we deal with this incredibly badly at present,” he said.

“There is enormous amounts of funding for academics to sit down and do detailed projects that ask questions of no interest to anyone…which we then publish incredibly slowly in academic journals.”

Goldacre, a senior clinical research fellow at the Centre for Evidence Based Medicine at the University of Oxford Software, had been taking a different approach to making data meaningful. p>

His colleagues – a multi-disciplinary team of engineers, coders, academics and clinicians, have worked together to produce ‘live interactive data-driven tools’.

OpenPrescribing.net is one such tool, which is now helping to identify prescribing variation across the country.

My view would be that paperless is possibly a step too far. If we can get to very paper-light that would be really useful

The idea surrounding practical uses of technology and data echoed throughout the event.

Dr John Payne, InterSystems’ physician executive for Scotland, spoke about how data and standardisation could be used to enhance patient safety, how it had been used to reduce limb amputations, and how, through the electronic patient record, information could be a driver for clinical change.

Perhaps the most-moving conference story of the difference data can make, came from Professor Julia Riley of Coordinate My Care.

“My sister in law died a very difficult death,” she said.

“Every time she, or my brother, called for help, the default response was ‘take her to hospital’. She had no control.

“All of the carers around her were distressed.There were unnecessary medications and medicalisations. She had all sorts of unnecessary investigations, even though she knew she was terminally ill.”

Riley has led the Coordinate My Care programme to change this all-too-familiar picture for families and to enable action before the point the patient calls for help.

With national statistics indicating that of the 500,000 people who die in England and Wales every year, almost half die in hospital – Coordinate My Care has helped to change this for end-of-life and urgent care patients in London.

An intuitive, personalised urgent care plan is putting patient choice at the heart of healthcare, making providers aware of patient wishes.

Of the Coordinate My Care patients who have sadly passed away, 80% have died in their preferred place. One in five are dying in hospital, rather than almost 50% doing so at a national level.

With positive response, Riley asked delegates if they would adopt such a plan with their loved ones if it became available outside of London.

Joining-up services

Work is far from complete in joining up health and care, but it is advancing.

James Palmer, NHS Digital’s programme manager for social care, emphasised that his organisation is still working in close collaboration with a number of local government providers, despite the absence of ‘social care’ from his organisation’s new branding.

Buy in for joining-up services and bringing social care, along with the digitisation of health, is there.

But there is a lot of work to do, the conference heard.

Siva Anandaciva, chief analyst at The King's Fund, outlined a good many challenges in the delivery sustainability and transformation plans – clinical engagement, workforce, counter-cultural change, organisational design, and the ability to understand what good looks like, being just some. But, despite the turbulent waters he depicted, he said he remained an ‘optimist’.

Perhaps summed up best by Mark Palmer; the conference showed that things were starting to happen and that meant tangible progress.

He said: “The agenda of healthcare has moved beyond strategy and plans to delivery, at last.”

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