But according to Andrena Logue, research director for healthcare at market research firm Current Analysis, there is not one country in the world that has yet managed to provide full open access to their healthcare data due to the complexities involved in doing so. She explains:
No single healthcare ecosystem has got enough consistency. The US and Europe are ahead in pockets, but in terms of open data and analysis, no one has exclusively cracked it. Healthcare as a sector is only just starting to get to grips with the issue. The US is more advanced with things like the Healthix health information exchange in the greater New York area, but the NHS is just at the start of the curve.
Healthix is a not-for-profit information exchange operated by HealtheConnections, which is regulated and funded by the New York State Department for Health. It gathers clinical data from organisations ranging from individual doctor’s practices to large hospitals in New York City and Long Island, enabling authorised practitioners to access the information easily as consenting patients move from one healthcare setting to another.
The aim is not only to improve immediate health outcomes by sharing pertinent data, but also to analyse it in order to forecast and pre-empt future public health events such as epidemics. The London Digital Programme has similar ambitions but is currently very much in its early days. But across the board in the NHS, there is still lots of work to be done in terms of data collection and analysis. Logue explains:
NHS Digital [formerly known as the Health & Social Care Information Centre, which gathers UK health information] doesn’t have enough rich data in general at the moment - it only handles or manipulates about 30% of data across the NHS so it’s pretty restricted. There are isolated cases of open data being used in interesting ways, but their scarcity also highlights the considerable gaps in terms of meaningful data analysis today.
One of these isolated cases involves Antibiotic Research UK, a charity that aims to tackle the antibiotic resistance challenge by, among other things, developing an antibiotic of its own by the early 2020s.
Antibiotic prescribing trends
As a result, last year, it began working with Exasol, which sells in-memory analytic databases, in a one-off project to understand regional variations across England in how antibiotics are prescribed. The raw data, which came from general practitioners (GPs or individual doctors practices) and was published by NHS Digital, was used to create a “heat map” in order to clearly visualise prescribing activity. Colin Garner, the charity’s chief executive, says the map revealed that:
There’s quite a lot of regional variation in prescribing per capita, but the general trend is that more antibiotics are prescribed in the north than the south, and in socially deprived areas of the country…one thing that could and should be done is to match the demography of an area with prescribing activity, but it appears to happen most in areas with quite a lot of social deprivation. So there seems to be a link between prescribing and people being poor as they’re generally less healthy.
But Garner also points out that such information could be used to understand the prescribing habits of different GPs in order to notify them if they are considered to be routinely handing out too many pills. He says:
Open data and big data are very powerful tools as they can tell you about trends that you wouldn’t otherwise see. So, for example, if the government wanted to reduce prescribing levels, it could simply interrogate a database and see if it’s happening everywhere or just in pockets, and change policy accordingly.
But Garner also acknowledges that to really get a handle on the size and true economic cost of the issue, it would be necessary to change the policy behind what kind of data is collected. He explains:
We don’t really know how many people have antibiotic-resistant infections as it’s not usually put as a cause of death. So first of all, we’d have to make antibiotic-resistant infections notifiable by GPs. There’s been some discussion about creating an antibiotic register similar to the cancer register where every case has to be recorded and reported, but it’s not happened yet.
But the point about the sector needing to agree on the most pertinent data to collect is a good one. Most current information tends to come from GPs, many of whom will share it quite happily with relevant hospitals.
Vital building blocks
But the same is not generally true the other way around and data from elsewhere in the system is scarce, particularly on the social care side, which will be vital to join up the dots in terms of overall care for patients. Put another way, it seems obvious that sole responsibility for collecting data cannot continue to reside with NHS Digital. Care provider communities from across the NHS need to actively get involved too. As Logue points out:
Patient records are sitting in paper-mountains so the NHS is trying to digitise it and make the data more accessible to patients. Open data is certainly something it’s talking about, but ‘open’ is culturally not something that’s a very familiar or comfortable concept here. Care providers work in silos so data sharing isn’t common, although things are starting to open up. So open data across the NHS is very much a work in progress and it’s only seriously getting under the skin of the issue now.
Challenges range from a lack of interoperability between IT systems to an absence of standards for consistent data sharing or how to obtain patient consent. The latter issue has been a thorny one for some time as evidenced by the closure of the care.data patient information-sharing scheme in July due to privacy concerns - although a replacement data collection system is now believed to be in the wings. Logue says:
Data sharing is critical and so it has to be resolved in some way. Getting parity of data across the country is not easy, but it’s the natural starting point because, if the quality of data is bad, it will weaken and dilute the quality of future initiatives. On the clinical side, it’s about ensuring data consistency, and on the IT side, it’s about interoperability to ensure the seamless sharing of data across organisational boundaries.
This means that ensuring electronic patient records are in place across the system is a key starting point to “get data sets to build out and analyse” in order to inform real-time diagnosis. But once the data is collected, there is also the issue of a “significant skills deficit” in terms of people with the expertise to manipulate and analyse this data in a meaningful way, especially in a hospital context.
Despite the many challenges though, Logue believes that the necessary building blocks for change are starting to appear. She explains:
The NHS tends to drown in politics and studies and lack of funding, but new models are starting to emerge among the vanguard sites, which are clusters of care providers in the community considered best-of-breed. Open data is also starting to be better supported, with each area submitting a local digital roadmap to NHS England that will theoretically at least outline what it’s trying to do with technology to facilitate better data sharing. As a result, Logue believes that the next two to three years will be critical:
What the NHS has always struggled with is pushing through initiatives at scale and pace. So it’ll rely heavily on vendors to fill the gaps and provide it with a steer on how things will work. Open data is a work in progress now, but all the core elements are starting to come together. It’s just consistency and an agreed way forward that’s missing.
Open data is incredibly important for the NHS on a number of fronts, not least because it is at the start of a process of huge transformation in the wake of the Five Year Forward View plan for the future being published in 2014. This plan is based on new models of care that will require serious data analysis to underpin and guide the necessary changes.
For care providers, meanwhile, open data is all about improving patient outcomes, being better able to anticipate and handle peaks in demand, improving workflows and supporting clinical research to inform future approaches to treatment.
For patients, on the other hand, it is about enabling them to at least partially manage their own care programmes, be able to benchmark local care services in terms of quality, and take preventative action, if desired, based on certain health indicators.
But to get this glorious nirvana, the NHS still has serious work to do in a number of important areas. Therefore, as Logue says, just how the next two to three years play out will be crucial.