Sssh! DataWell’s clear-cut priority is the protection of confidentiality

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By Michael Cape

Developed in Manchester, this software system can ease exchange of patient data

Everywhere people are, be it out shopping in a supermarket or sitting at home online, they are adding information to their digital footprint – which feeds into what is known as Big Data and so enables them to be traced.

The use of Big Data can be beneficial to society, particularly in terms of health – which is why Gary Leeming’s job as director of informatics for the Greater Manchester Academic Health Science Network (AHSN) is to source and use the digital health footprints of patients both their for own benefit and that of clinicians.

Gary Leeming
Gary Leeming

Mr Leeming is currently heading a project known as DataWell that could turn out to be the holy grail of healthcare – namely the establishment of a software platform that enables the exchange of NHS patient record information electronically.

This in a sector where much communication is still done using the postal system, and often second-class – something which anyone who has waited for test results to be transmitted from the hospital to their GP will confirm.

DataWell was launched on a premise that there are many NHS organisations involved in healthcare across Greater Manchester, and patients do not just attend one general practice or one hospital. The hospitals with specialist services need to be able to treat people from across the region and follow up the outcomes so they can learn what works and what does not.

Currently, NHS patients have separate records with different providers: GPs, local hospitals, community health centres and so on. The consequence is that no one within the NHS has an overall picture of a patient’s record, and this leads to safety issues in that no one has an overview of all the medications a patient is taking and their care is not joined up. Increased costs also are involved, due to duplication of data entries, the repeating of tests, and time being spent searching for information.

Inevitably, this means that the patient has to retell their story each time they see a new doctor or nurse, and they have to wait for what can be quite a lengthy period while information is sent from one organisation to another. The overall objective of DataWell, therefore, is to create a framework that simplifies and enables the easier sharing of data.

DataWell is to be based on an existing software platform from LumiraDx – which is already deployed in New Jersey in the US, but the intention is to take things to a new level in Manchester – and involves the Greater Manchester AHSN working in partnership with IBM and EY (formerly Ernst & Young).

First, however, Gary Leeming and his team must clear the main hurdle in the path of the project: the issue of confidentiality. Not everyone is happy for details of their bunions or whatever it might be to leave the sanctuary of the GP surgery or the office of their consultant.

So the first stage of the process will be to work with patients, with the public, with Healthwatch and with local information governance staff to develop the right consent and policy procedures. As part of that, use of an app that allows patients to opt into or out of disclosing all or part of their medical records will be explored.

“Confidentiality is key,” Mr Leeming says. “We have a patient-engagement programme which is working on this. It needs a full audit trail of consent, it needs to be manageable.”

While to an outsider this might appear seriously complicated, a former software engineer such as Mr Leeming does not see it as a major problem for what is effectively a massive IT project. “What it will do is allow records to be transferred safely,” he says. “If you think of using Expedia and want to fly from here to here, that simply taps into different airline systems and displays them as one page.

“Similarly, this system will go off to different places to gather your records in one place – your blood test results, when you last visited your GP and what was prescribed.”

One of the reasons DataWell is likely to be successful and go the distance can be found nearby, in that neighbouring Salford has already achieved a similar global success story with a smaller project. Gary Leeming knows this very well, as he used to be the digital officer for what was known as the Salford Lung Study, which will at least in part form the basis for this latest project.

The Salford Lung Study was itself a world first – a new way to explore how effective a treatment for asthma and chronic obstructive pulmonary disease (COPD) was in the real world. It involved a pioneering collaboration between GSK (GlaxoSmithKline), the NHS and the University of Manchester that recognised one simple thing: the lives of patients are complicated.

The study was designed to help the doctors understand how prescribed medicines work in the real world, where patients are all individuals. Patients might have several conditions or characteristics; they might smoke, or take a number of medications; they might not always remember when to take medicines, or not take them as often as they should.

Traditionally, the efficacy and safety of a medicine is tested through double- blind randomised controlled trials (RCTs). These typically involve a specifically defined group of patients with a particular diagnosis in a highly controlled setting. It is an approach that is regarded as both scientific and robust.

But to take part in an RCT, people often have to meet strict recruitment criteria, and individuals with a number of illnesses can be excluded. This means that patients in the trials do not always represent the population as a whole.

For respiratory conditions, this is particularly problematic: just 7 per cent of COPD patients and 3 per cent of asthma patients would be eligible for a traditional RCT, because their age, the severity of their disease or the presence of other illnesses means they fail to meet the criteria.

The Salford Lung Study was seen as a major advance in terms of clinical trials in that it offered “real world outcomes and real people”. What made Salford so successful – and this is something that will also apply in Greater Manchester – is the fact, almost unique to the UK, that GPs have held their records on computers for ten years and hospitals for 15 years. As such, there is a mine of relevant data ready for access once the confidentiality issue is put to bed.

Such was the impact of the Salford study on the world healthcare stage that it saw a number of major international companies head across here to become involved or seek access to tap into the research for their own projects. This situation is expected to recur with DataWell, which in itself will be able to claim to be a world first in that it is more comprehensive than the Salford study and on a significantly larger scale.

“Digital health is a real breakthrough,” says Dr Mike Burrows, managing director of the Greater Manchester AHSN. “It is increasingly going to be part of the care revolution in the future. This concentration on the North of England opens up real opportunities and strengthens the message of the Northern powerhouse.”

DataWell, then, is effectively being handed the baton from Salford. “What we are trying to do is to put the patient in the centre of care,” Gary Leeming says. “At present, that isn’t the case. We have a real lead in Manchester because of what happened in Salford and we want to make sure we stay there.

“Not that this is just about Manchester. We are working with the Northern Health Science Alliance and the other AHSNs in the North in terms of sharing information to make sure we are all on the same page. We will also be involved in the Digital Health Cities project [to be announced later this month] when it gets up and running. Of course, though, we don’t intend to be second.”

This could be the big breakthrough

Dr David Rog, a consultant neurologist at Salford Royal Hospital, believes the DataWell project will be the breakthrough that is still needed for the safer management of patients.

While his own NHS hospital trust has benefited in terms of integration of records, with communication levels between primary and secondary care now league-topping, he says the situation elsewhere tends to be “variable”.

Dr Rog’s particular concern is the transfer of pathological test results, a crucial part of how the drug monitoring at the regional neuroscience service based at Salford works. Once the records are available to all, “with all the necessary safeguards in place”, as he puts it, this will mean that situations such as the repetition of blood tests or faxing of information when a patient arrives in an accident and emergency department will become redundant.

Now, as a result of his input, this has been accepted as an accelerator project by the DataWell team. “One of the advantages of working with the Greater Manchester Academic Health Science Network,” Dr Rog says, “is that change can be effected across the region rather than as previously working in a silo environment”.

E-referrals: a pioneering plan

When patients are discharged from hospital, there is often confusion as to why their medicines have been changed – the result being that one-third of patients are not taking them after ten days and between 30 per cent and 50 per cent do not follow the guidelines.

P9 Neil Watson
Neil Watson

One consequence of this is that it impacts on the 5 per cent to 8 per cent of unplanned admissions which are due to medication issues. Similarly, on arrival in hospital, it is sometimes difficult for staff to establish what medication someone is on.

The solutions to these problems can be found in hospital and community pharmacies working closer together, sharing relevant medication information to improve patient safety and outcomes. Until now, this has been difficult because communication – assuming there was time for any – was limited to phonecalls.

Now, however, pharmacy staff at Newcastle upon Tyne Hospitals NHS Foundation Trust are able to communicate directly with community pharmacies in the region to transfer selected patient care by using a pioneering and secure e-referrals system. Backed by the Academic Health Science Network for North East and North Cumbria (AHSN NENC), e-referrals are now gaining traction nationally.

“The patient is often with us in hospital for just three or four days,” says Neil Watson, director of pharmacy at Newcastle upon Tyne Hospitals NHS Foundation Trust. “So it makes complete sense to transfer their ongoing clinical care, in terms of medication follow-up, to the community pharmacies.

“This will enable them to support patients with their medicines, including any changes made in hospital. The e-referrals allow us to routinely communicate with community pharmacists, who contact patients within three days of discharge.”

Unlocking data apps

It seems that Leeds may well hold the key for successful implementation of the Big Data project to transform the way the NHS communicates both internally and externally.

Emma Cheshire
Emma Cheshire

The city is unique in being home not only to the data backbone of the NHS but also to a number of leading companies involved in the digital health arena. These include the UK’s leading supplier of clinical software and services, EMIS Health, which is working with the Yorkshire and Humber Academic Health Science Network and a number of other partners in a programme launched this month, with the objective of making digital health a reality first in the North, then in the rest of the UK.

The fact that EMIS Health supports clinicians across every major healthcare setting, supplying the individual electronic systems currently used by health service providers, means that these are effectively the key components needing to be linked together in order to transfer all the data.

EMIS Health systems currently hold 40 million cradle-to-grave GP patient records and 30 million patient records within Accident and Emergency hospital departments. EMIS Health is already sharing data between its own systems and has published a set of open standards that will enable wider integration with third-party software.

Under the Dotforge Health + Data Accelerator, as the programme is known, EMIS Health staff will support and mentor companies to integrate relevant solutions with its own systems. Where the Yorkshire and Humber AHSN comes in is that it has been working alongside Dotforge to ensure that the innovative start-up companies needed to support the programme receive the financial and administrative support to be successful in delivering the solutions needed.

“We are looking to help shape the future of the NHS here in Leeds,” says Emma Cheshire, the Dotforge chief executive.

Heart checks by mobile phone

A small electronic device attached to her mobile phone has become a vital piece of equipment for specialist heart failure nurse Linda Hilton. The slim attachment is an Alive- Cor – a mobile heart monitor which she places in the palm of a patient’s hand whenever there might be a problem.

Within seconds, the phone screen lights up with a graph and heart rate readings, telling the nurse whether or not there is cause for concern. “It is now part of my toolkit along with my blood pressure machine and stethoscope,” says the Liverpool Community Health NHS Trust nurse.

P9 sub

One of Linda Hilton’s longterm patients, Albert Edwards, had to give up his job as a kitchen fitter four years ago because of a heart condition. He too is a fan of AliveCor: “If it gives a second opinion on the spot then that suits me,” he says.

The Innovation Agency has been promoting AliveCor and other devices which identify atrial fibrillation. The AliveCor distributor, Francis White, is a Fellow on the NHS Innovation Accelerator programme launched last year to support healthcare pioneers.

It has been calculated that 34 people in Lancashire and 12 in Liverpool have been saved from a stroke since the work began in the North West. This has meant huge savings for the health economy, as care costs in the first year after a stroke amount to £1.1 million, then £250,000 for every subsequent year.

AliveCor is not currently available from the NHS, but people are buying it from Amazon on their GP’s advice and 8,000 were sold in the UK last year.