A light at the end of the tunnel

July 2016

Surgical lightBCS Multimedia Editor, Justin Richards, reports on the highlights from this year’s UK e-Health week, specifically from his time spent at the partly BCS-sponsored HC2016.

The BCS Health annual conference and exhibition is run in partnership with HIMSS, (the global Healthcare Information and Management Systems Society), and is supported by NHS England. This year’s BCS Health programme had a theme of evidence-based informatics, focusing on the need for evidence, evaluation and learning health systems.

HC2016 featured many fine and passionate speakers, and was a great forum for teams from across the country, and internationally, to share their experiences within health informatics; both their successes, failures and future plans. In fact, the breadth of delegates at HC is quite startling, with leaders from health and social care, mixed with those from industry, academia and government agencies; all bringing their own expertise and experiences to the table.

Frontline practitioners told conference attendees about the realities of care delivery - not only about where informatics can help, but how to avoid making things significantly worse.

I’ve been covering this event for several years now and the atmosphere this year was, by far, the most positive and upbeat I’ve experienced. There were many positive developments to inspire optimism including on-going clinical leadership via chief clinical information officers and the Professional Records Standards Body, replete with a new interoperability standard - Fast Healthcare Interoperability Resources (FHIR) - that seems to be enthusing implementers, and the international vendor community.

Regional initiatives like the Northern Ireland Electronic Care Record, the Healthy London Partnership, the Dorset Care Record and the Great North Care Record all seem to be going from strength to strength and feedback, thus far, is positive.

Building on information

There were delegates attending who seemed to think that the health informatics community is starting to turn a corner; that perhaps the digital health tipping point really is within reach. In fact during his opening keynote address, Minister for Life Sciences, George Freeman MP, began by saying that he wants to focus a light at the end of the tunnel for patients. He said ‘Today we will start with the data and use it to build on clinical information’. He saw informatics as being ‘the oil that keeps it all moving’.

The Minister then stated that ‘we are still running too much on paper. We have a data repository 10 miles long!’ In fact, NHS England has recently set out an ambitious plan for paperless working throughout the whole organisation, although the Minister, perhaps wisely, didn’t dwell on this.

The intention is to make the NHS paperless by 2020. Instead, he said, of all the paper, ‘we want to have it as a digital, accessible service’. A bold statement considering the amount of data we are talking about! This ‘direction of travel’ was also reinforced by the Health Minister’s announcement that the HSCIC is to be rebranded NHS Digital.

The Minister has a ‘different vision of health citizenship for the 21st century; one that empowers patients and thereby creates active health care citizens’. He went on to say that it was all about ‘harnessing technology to deliver the core aims of the NHS’.

Foreman went on to talk about the Accelerated Healthcare Review that was set up late last year to assess the uptake of digital technologies within the NHS. This has set out a series of milestones. Advisors to the review include the likes of National Data Guardian Dame Fiona Caldicott and Lastminute.com founder Baroness Martha Lane-Fox, who’ll be covering digital inclusion issues.

The Minister later went on to say that the government were ‘determined to create a business environment in the UK that would support the digital health industry and create a global cluster of digital tech firms’. Apparently the digital health industry has grown by 23 per cent in the last year alone!

Continuing to update the crowds at HC2016, the Minister went on to talk about ‘My NHS’, which was recently ‘soft-launched’ in order to ‘better sort issues out’; the NHS Portal, which was launched in January and is hoped will help build a more integrated digital landscape; and ‘XGov’, part of the government’s digital strategy, which has just been launched.

George Foreman went on to say that their priorities for the next few years are to shift the agenda from the back office towards more tangible benefits for patients so that they can interact with the system more easily. He said: ’It’s not just about building the best tracks, but also the best trains to run on them’. Other priorities include: ‘unleashing’ civil health care monitoring and identifying best care practices, whereby more data is shared to help improve the system for patients.

Digital opportunities

Following on from George Freeman MP, came Arvind Madan, Director of Primary Care for NHS England, who talked about the digital opportunity for primary care. Arvind was a GP for 20 years and in December of last year took on her new role, primarily out of frustration. She sees her current role as a way of getting an insight into the issues facing GPs, and finding ways of developing more supportive connections between them, and building on that network.

We are currently living in a period of unprecedented demand for all services, where patients are struggling to get appointments with their GPs. At the moment half of all patients go online to research their ‘condition’ before presenting at the GP’s surgery, usually with a sheaf of print-outs from Google!

Arvind wants to look into the ways in which technology is having an impact, but realises that we are still very much in ‘the foothills of exploring the possibilities’. Technology currently allows us to do online appointment booking and repeat prescriptions, but Madan sees that there is a ‘need to ensure access to patient data at the point of care’, which isn’t always being delivered.

She sees that there is a need for greater interoperability to allow data sharing between health and care professionals and to empower patients, enabling them, via remote means, to prevent ill health through self-care. This was a message that came up repeatedly throughout the conference, many times.

Arvind Madan promised greater funding going to clinical commissioning groups (CCGs), increased data quality training, improving levels of information governance and cybersecurity, and an increasing uptake of patients using online services. She also wants to see Wi-Fi in all GP practices, mobile access to records, more telephony and e-consultation tools, and an apps library on NHS.uk to support both clinicians and patients.

Arvind also sees the need to improve data extraction and payment services and wants the summary care record to be the norm throughout the country, which will obviously require better record sharing across practices and services. She also sees the need for a digital maturity index and a buying framework for CCGs too. And, with over 50,000 enquiries a month, Madan wants to see more resources going into advice and support services nationwide.

As with many clinicians, Arvind thinks that it will soon be quite ordinary for patients to take part in their care online, where they will find information to ‘self-help’, and symptom check. She thinks it will lead to a better experience for patients and an efficiency gain for the NHS. However, a balance needs to be found between patients using digital services and receiving face-to-face care by GPs.

Arvind said: ‘The remote management of care will really help with the long-term management of conditions and enable doctors to make extra time to see more immediate patients’. When asked how we might see this ‘multi-media, big data’ type of health care progressing, Madan indicated that ‘there are still many less tech-savvy GPs out there who don’t want to engage with them, but this is changing’ and they see a ‘click first’ path of care as being the way to head in future, but whatever direction the NHS takes it still needs to ensure the right level of care is in place
for patients.

Digital priorities for GPs

Dr Robert Varnham, GP and Head of General Practice, NHS England, seemed to agree with much of what Arvind Madan had espoused. Much of his talk was about encouraging the public to try and stay healthy in the first place, and to encourage people to take a bit more responsibility for their own health through better, healthier living, self-care and by using community pharmacists more.

He saw the need for more types of consultation, including online, (for example, by email and Skype), and by phone, including texting. Robert also saw the need to grow and diversify the workforce as ‘one size will never fit all’. He encouraged the audience to think about group consultations and the use of ‘access hubs’, in addition to more traditional face-to-face patient: doctor meetings.

Tracey Grainger, Head of Digital Primary Care Development for NHS England, pushed the notion that there is a real need to get the digital basics right first, with access to patient data at the point of care being the number one priority; followed by increasing levels of interoperability, to allow for data sharing between the requisite health and care professionals, with a healthy twist of patient empowerment thrown in for good measure.

Tracey’s own objectives are to ensure that digital primary care services can respond to service and organisational change and can enable innovation within new models of care. She also wants to see clearer responsibilities for network commissioners and local commissioners.

Grainger also told the delegates that there had been a 18 per cent increase in funding this year to help provide more core and mandated services, including a new assurance tool that would ‘go live’ very soon.

Tracey Watson, Head of Partners and Commercial Strategic at NHS England, also laid out her own priorities, namely improving the appointments systems and sorting out relationships with principle suppliers; although one of the suppliers in the audience complained that services couldn’t be delivered for 40 per cent less than the initial estimate of £2.53 per person, which was obviously what the NHS was trying to do!

NHS accelerator

It wasn’t just talk about data management and patient self-care at the conference, though. One rather encouraging meeting introduced many delegates for the first time to the NHS Innovation Accelerator Programme.

The NHS Innovation Accelerator (NIA) is a new NHS England programme, co-hosted by UCLPartners and The Health Foundation in collaboration with AHSNs across the country. Its aim is to deliver on the commitment detailed in the Five Year Forward View - creating the conditions and cultural change necessary for proven innovations to be adopted faster and more systematically through the NHS, and to deliver examples into practice for demonstrable patient and population benefit (well, according to its website).

The session began with Noel Gordon, a non-exec director at NHS England, declaring that he ‘wanted to democratise the way innovations happen in the NHS’. He wants the NHS to become a more ‘agile culture’, and to become better at ‘up-scaling ideas’ and ‘to help light the runway to digital innovation’. He called for a change in thinking so that specially selected ‘Fellows’ (some of which he introduced at the event) are teaching within the NHS, as ‘effective intreprenueurs’ within the organisation.

The NHS Innovation Accelerator (NIA) Fellows included the likes of Ben Underwood, creator of Brush DJ, a dental app used to help reduce tooth decay in younger people; Paul Volkaerts, founder of Nervecentre Software, a mobile technology to help frontline staff in hospitals; Simon Bourne, developer of myCOPD, which helps to improve inhaler technique amongst those that suffer from COPD and other pulmonary diseases - since 90 per cent of clinicians aren’t qualified to teach their patients on how to best use the devices - and Andrea Howarth, clinical researcher and developer of SAPIENTIA Software, which helps to rapidly diagnose rare diseases through use of the human genome project.

The NIA also covers work in the field of clinical research, including the likes of Join Dementia Research, which allows members of the public to proactively register their interest in participating in dementia research.

Dr Mahiben Maruthappu, co-founder of the NHS Accelerator Programme, rounded off by saying that the project was designed to enable those GPs and clinicians with great innovative ideas to have the ‘headspace’ in which to look at possible innovations for the service and look to developing new technologies and improve ways of working. The Fellows still need to work out how to scale their innovations, but that’s where the accelerator programme comes into play.

Earning public trust

Professor John Williams, Director of the Health Informatics Unit, and Chair of the Royal College of Physicians, was on hand to introduce the National Data Guardian, namely Dame Fiona Caldicott, to discuss how the health and care system can earn the public’s trust when it comes to the use of confidential data.

Dame Caldicott started by saying that: ‘the duty to share data can be as important as the duty to safeguard it’. She went on to say that she is concerned about the security of data and the Care Quality Commission has reviewed current approaches to this.

Caldicott has been tasked with developing standards across the NHS and social care system and has met with the likes of the BMA, ICO, various service providers, research commissions and the Civil Service to discuss this. They have found examples of good practice, but there is a need for simple, clear, relevant and consistent standards. These standards also need to be feasible.

She went on to say that: ’the public want to know that compliance can be an assurance’. Unfortunately it was found that there is a fairly low level of understanding by the public as to how the data will be used or shared and this uncertainty needs to be addressed.

Most people trust the NHS but, understandably, want to know what data will be used and how it will be used. There is generally more support for the use of anonymised data. Any opt-out needs to be simple too.

Implementation of the standards will take time and requires support from central bodies. The matter of data retention is a complex issue and the legalities more complex still. Dame Caldicott went on to say that they are waiting on the publication of their review, but this has been held up due to the forthcoming referendum.

However, in any respect, she feels that the issue of data sharing within the NHS should be ‘part of a two-way conversation between the NHS and the public. It will be a responsibility that we all share. ‘And since there are over 60 million people living in the UK communication is not always easy!’

General themes

The main theme of this year’s conference was around evidence-based health informatics. And, just as there was plenty of evidence to support technology in healthcare, there were a few who pointed out that informatics had not always been good for patients, including Professor Enrico Coiera from the Department of Learning Health Sciences, at the University of Michigan, USA.

He posited that ‘e-health was just one system of intervention, just one facet of a larger project’. He felt the discourse was too often centred on the tech and not on the central health issues. He went on to suggest the need for a map of variation for informatics interventions. E-health, he said, ‘is all about communication and the net cost of its use will only be determined over time, and that is why we do need evidence-based informatics to help guide us’.

 

Image: iStock/TanyaRoss71

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