Can open source save health care?
When health care is struggling to meet demand, open source innovation could improve service and save money…
Maintaining or increasing real-terms spending on health may be a brave decision in austere times but, despite the public sector wage freeze, budgets cannot keep pace with the rising cost of health care and an ageing population. However, from pressure to change the way we do things to make budgets go further comes opportunity for real innovation, and an entry for the nimble (did someone say agile?) hackers of the free and open source movement.
The figures are so high as to seem near- meaningless – with 1,400,000 employees, a budget of more than £100 billion, 2,300 hospitals and 10,500 GP practices, the NHS deals with over 1 million patients every 36 hours.
Costs are notably high across the sector. LUD was told of a simple tray costing the NHS £75, because it has to be ‘medical grade’ plastic. Imagine instead 3D printers in every hospital producing plastic parts to order from open source designs.
And caring, too
The NHS has the relative luxury of a ring-fenced budget. Adult social care has been hit with unprecedented cuts, and local authorities (who are responsible for most social care provision) are dipping a toe in the open source waters and finding them unexpectedly welcoming.
It may not please all of the giant corporations currently dominating the health and social care industries, but the door is opening to small, agile competitors and – from the FOSS world – hack days are introducing free software coders and startup businesses to health-care professionals and decision-makers.
Health hack days bring together “developers, designers, clinicians, health-care professionals, marketers, project managers, researchers and coders” to produce working technological solutions to health-care problems in a concentrated session of 24 or 36 hours – often running over a weekend. Special interest groups like Health 2.0 (see boxout on page 9) are bringing together innovators to collaborate on health problems at events around the world. One weekend this June, LUD attended Manchester Health 2.0’s inaugural North West Health Hack, at Barclays’ largest Global Technology Centre, near Knutsford in Cheshire.
The Cheshire set
Barclays hides over 3,000 techies away on this campus, but recently it has been reaching out to the local tech community – including sponsoring the Manchester branch of TechHub (part of a worldwide community of collaborative spaces for technology entrepreneurs). Hosting the North West Health Hack on behalf of Manchester TechHub is a further step to supporting the region’s tech community.
Barclays’ Julian Bucknall joined Pascal Lardier, from Health 2.0 Europe, in compering the event, supported by Ben Hookway of TechHub, Idalia Dawidowska the Health 2.0 Manchester Chapter Leader, and a team of TechHub and Barclays staff to keep everyone supplied with coffee, pizza and all the other accoutrements of an all-night hack.
Introductory talks included a useful orientation to developing for health care in the form of Quinec CEO Robbie Hughes’s ‘10 Rules for Health Startups’ – such as “health care is a system, not a market” – which encouraged developers and entrepreneurs to try to understand doctors and other clinicians, and their working environment, in much the same way that Linux advocates try to orient outsiders into the FOSS world. However, the health world is one of compliance and paperwork, and teams need to allocate appropriate resources to this.
Professor Shôn Lewis had some interesting statistics comparing the size of health-care domains and the amount spent on research, which showed mental health problems disproportionately missing out. He introduced mobile app ClinTouch, a way for people with psychosis to keep track of any symptoms and problems, to give users more control over managing these through better awareness, and to enable early intervention.
With judges for the apps including a clinician and a venture capitalist, emphasis for the weekend was on practical projects that could achieve a place in the competitive mHealth/eHealth market. There were also business mentors on hand, to complement the more technical help.
Pitches were a pleasant surprise: of the 15 one-minute proposals given, the vast majority were well-thought-out ideas for solving problems, with viable products potentially in sight by the end of the weekend. We heard them summed up by one of the organisers as “proper doctors trying to solve proper problems”.
Pitches were often from practitioners facing a hurdle in their working day, but some were more personal, from those who had encountered a disease directly. Carey Cameron, of Digital mC2, proposed a mobile app to ‘gameify’ screening for bowel cancer – one of the top three cancers by fatality in the UK, which is taking 16,000 lives per year (and growing in incidence by 10 per cent per annum) and costing the NHS more than £1.1bn annually.
3Squared commercial director James Fox and UX designer Alex Pawlak teamed up with Cameron to produce ‘Gut Feeling’ – to raise consumer awareness of symptoms of bowel cancer; engage participation and motivation among ‘at risk’ target groups; and improve national screening uptake figures (currently only 9 per cent). It was singled out for praise by one of the judges, Dr Ranjit Gill, chief clinical officer from NHS Stockport, and came second overall.
Abstrakt & open data
Chris Garrett’s team at multi-platform developer Abstraktion is used to dealing with massive data sets, so led a team investigating prescription data to find the best areas for recruiting for new drug trials. By lunchtime on the first day they’d crunched through 15 million lines of data and were discussing data visualisation ideas.
Catriona Kennedy, who had proposed a more transparent view of patient data, giving information about where the data is used, teamed up with Idalia Dawidowska, who wanted to see patients having the “right data at the right time”. They worked in an expanded team to produce a system helping to empower patients through self-management of data about symptoms.
This combining forces on similar ideas is not unusual at hack days and unconferences – a flexibility not enjoyed by events which are timetabled and set in advance. However, while agile working may be standard for software startups, rapid pivoting is not an option for many medical apps, according to Robbie Hughes. Practitioners “need to be sure that they’re working and tested, and then signed off,” Hughes told us, adding they had to work with “a waterfall/agile hybrid” of their own.
The eventual winner was the team from Manchester-based developer Click Innovate, who worked through the Saturday night to deliver Taggr. It uses near-field communication (NFC) – the technology featured in new smartphones that is poised to transform payment systems, and much else, once security niggles are ironed out – to track patients’ locations and their medical needs, reducing the “administrative burden on in- patient secondary care.”
In this case the NFC devices are a lightweight type that can hold 40 bytes, and can be used in place of stickers and wristbands which are commonly used in NHS wards for tracking patients and objects. The code can be found on GitHub, and there’s a short video too.
Back in the NHS
While Health 2.0 has come from entrepreneurs and coders, and the Liverpool Adult Social Care events were initiated by service users and coders (although both were well received by health professionals), clinicians have also initiated hack-day events.
Dr Carl Reynolds – with David Miller, and coder Ross Jones – started NHS Hack Days last year to get doctors talking to the free software community about their needs. Events have included London, Liverpool and Oxford, and generated solutions to help with everything from collating faults in the UK health service (NHSBugs.net) to finding out what NHS labs are currently storing and where.
Go to the hack days website for upcoming NHS Hack Days, including Cambridge in September, and get involved.
Not untypically, the term ‘open source’ is sometimes used ambiguously for open APIs and open data in health care, while describing software that is not free and open – a problem acknowledged by Health 2.0 Manchester with a forthcoming meeting on the topic. Nevertheless, much of the innovative work going on is with explicitly free and open source software events – and NHS Hack Days, for example, “support openness and invite you to share code with us on GitHub.”
Out of these teams have come FOSS apps like RandomiseMe.org, a platform that enables “individuals and organisations to run trials of varying sizes” – and backed by Ben Goldacre’s BetterData.org.uk as it “helps to spread the idea of randomised trials, advocate for their wider use, and normalise them in the public imagination.”
Not all medical software has a political aim, of course. oPortfolio – “a better NHS portfolio” – is simply aimed at helping anyone progressing through a medical career and finding themselves hampered by the dreadful ePortfolio software currently available to them.
Indeed the NHS’s ePortfolio is so notoriously bad that Dr Laura-Jane Smith started the “ePortfolio Data Liberation Front”, and at 2012’s Liverpool NHS Hack Day spoke movingly on the need to “liberate data” from it, inspiring an app worked on with Python hacker Nicholas Tollervey, and Dr Marcus Baw, that won a ScraperWiki prize.
There’s much energy and ingenuity going into solving health problems, particularly in the North West, but can hackers save health care? Not on their own – the NHS has huge problems in particular with management and training – but the kind of agile, low-cost solutions that can make practical differences to people’s lives is coming out of hack days and free software.
Another product is the regional boost to industry, as small tech companies thrive in this new collaborative health ecosystem. This is particularly the case in the North West, where Connected Liverpool’s vision of public health as
a driver for smart cities through preventative measures – “cities empowered by maker communities to be healthier and happier”, in the words of Max Zadow – is a thread running through much of the assisted living development work.
It’s not just the North West – Health Hacks at both ends of Ireland, and medical technology startup companies across Britain, are showing practitioners the way. In 2010, when the comprehensive spending review was launched, a Treasury spokesperson said: “Anyone who thinks the review is just about saving money is missing the point. This is a once-in-a- generation opportunity to transform the way that government works.”
However, ring-fenced budgets have protected the NHS from this, despite pressure coming from population factors and cuts to social care. Given this, pressure for change must come from below, too – and collaboratively produced work of doctors and carers, with FOSS developers, responding quickly to real needs, is convincing many health and social care managers that useful changes are not just desirable, but actually possible.