Our report on open data in health

Last year we were commissioned by NHS England to research the needs and experiences of people using open data about health. NHS England wanted to have a strong evidence base from which to develop their open data policy and programme agenda. We conducted a series of formal interviews and informal conversations as well as some desk research before writing up what we learned as a report.

Today we’re publishing that report online. We believe that our two key recommendations would go a long way to addressing the most pressing issues that we discovered. We’ve also included summaries of individual user interviews for those who want to really understand the detail of life as an open data user.

If your organization is interested in this kind of work, we’d love to talk with you and see if we can help - do get in touch.

It was fascinating to hear stories from a wide range of people who use open health data. Many of their experiences mirrored what we found when working on projects such as Prescribing Analytics and what we hear from people working on open data projects at NHS Hack Day.

Although some specific datasets or teams are excellent, many issues remain with the quality of data publishing in health. Data publishing is precisely the kind of problem that the phrase It’s not complicated; it’s just hard could have been coined about. Many of the issues people face are entirely tractable if we take the time to understand their needs and respond to them thoughtfully. It’s great that NHS England is conducting this kind of research, and we hope that they can use this evidence to move forwards with open data in health along with their colleagues from other organizations.

One of the other features to emerge from our research was the lack of data routinely used as part of clinical practice in the NHS. In our work building digital tools for clinicians we regularly find that they don’t have access to basic data about their activity. The Wachter report recently highlighted the lack of digital capability at many institutions in the health sector. There is also an equivalent lack of capability to make better use of data, and this is likely to make it significantly harder for clinical services to adjust well in the face of a changing population and the current aggressive financial environment.

Although it was decidedly out of scope for this report to address these challenges, we would argue that in order to “exploit the information revolution” as NHS England put it in 2014’s Five Year Forward View much work needs to be done to capture better data, make it available at the point of service delivery, and to build the capability to use that data routinely to make better decisions.

Many thanks to all of the interviewees, everyone who talked to us or provided feedback on drafts, and especially to Giuseppe Sollazzo who did the majority of the real work on this report - conducting interviews, and analysing the common issues.

If you have any feedback on the report itself, do let us know what you think at hello@openhealthcare.org.uk

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Show me the data vs. Show me the things

The health system in the UK publishes a lot of data.

A quick trip to Data.gov.uk reveals 1,897 health related datasets. At the same time both NHS England and NHS Digital publish official National Statistics, not to mention the various data portals (NHS England, NHS Digital, NHS Digital again), and data published on Gov.uk.

And this is before we get to stray web pages related to specific pet political projects that contain “Download and take away data”, in some obscurantist dialect of almost-but-not quite CSV that doesn’t “just work” with any standard tools. (Yes MyNHS, I mean you.)

Data however, is incredibly boring to most humans. Which makes it really hard to understand the value of all of that data, by just looking at a list of data.

Even more so than data in general, Open Data is an abstract concept that can be hard to grasp.

For years, Open Knowledge and the Open Data Institute (and others) have worked hard on the valuable job of finding ways to make these concepts clear and accessible.

Our experience at Open Health Care is that clarity often isn’t enough - you need to make things tangible for people to really understand them. That’s the main reason that we believe in Showing The Thing - that practical demonstrations have vastly more power than descriptions or abstract concepts.

That’s why we so often build prototypes of things to help us tell stories about how the world could be better, and why we encourage communities grappling with digital and data to learn by doing.

Earlier this year, we spent some time with the Open Data team at NHS England working out how we would go about applying Show The Thing to the world of Open Health Data.

We started by doing some desk (Google and Twitter) research collecting examples of interesting projects that had used Open Health Data to build a product or service, to tell a story or start a campaign.

This turned up some old favourites - like our project from a from a few years ago visualising issues with the prescribing of non-generic Statins - as well as some interesting projects that were new to us - like the Royal College of Paediatrics and Child Heath campaign “Why Children Die”.

We then gathered these together and built a single directory website that showcases these projects in one place.

This directory helps to point people at stories and examples of things that have used open health data - and in doing so, helps to show why that data is valuable in a way that they can grapple with and kick the tyres for themselves.

For instance - one of the great things about the Open Prescribing project made by our friends at EBM Data Lab is that is has buttons you can press.

People like pressing buttons.

We’re still looking for more great examples though, so if you’ve worked on a project that uses Open Health Data that you think might be suitable for the directory, you can submit your project here.

Because it’s always great to have more things to show…

Photo credits:
Redjar

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NHS Hack Day 14 - Newcastle

A few weeks ago we were excited as NHS Hack Day visited Newcastle for the very first time.

As ever, we brought clinicians, patients, and other NHS staff together with developers, designers, researchers and others to share experiences, and spend a weekend working on short projects that address some of the frustrations and problems faced by patients and NHS staff every day.

After an initial session pitching potential project ideas to the group, the attendees gradually formed into teams and started work, exploring the spaces around the problems they’d chosen to work on, making new friends, and examining potential ways to address them.

You can see all of the teams that formed on the event page of the NHS Hack Day website, but a special mention here goes to a couple of our favourites:

Recording consent preferences

The “North Share” team spent much of the weekend exploring the thorny issues around consent, privacy and data sharing in the context of the NHS. Recent experience with a range of national and local projects suggests that there is plenty of work do be done in this area, and contributions in the form of tangible prototypes that help people to tell stories about and think through the issues involved are particularly helpful.

You can take the prototype they made for a spin yourself and see what you think - try asking questions like:

  • do I understand what this means?
  • what do I think this should do?
  • what the consequences would be?
  • how would I change this to make it better?

Managing consent, and doing the right thing around privacy and personal data is something we spend lots of time thinking about at Open Health Care, so it was great to see others in the community engaging with the issues in such a constructive, positive way.

Locating Community Dentistry

Highlighted on the NHS Hack Day mailing list beforehand was how hard it is for people with complex needs to locate appropriate community dental services via the NHS Choices website. (You’re likely to be able to find a general dental surgery, but no information about specialist services for people with complex medical comorbidities, physical disabilities, dementia etc)

Not for the first time, we find a situation where a lack of available complete, canonical data about the Physical NHS (the services on the ground across the country) makes it harder than is acceptable for patients to get the care they need.

At the event the team built a prototype of a service that would help people locate dental services appropriate for their situation.

This prototype allows the team to tell the story of how the world should work for people trying to access dental services even though the data is unavailable (in fact, doesn’t exist).

One of the really interesting classes of hack day projects is the ones that go on to become campaigns on a particular topic - which is exactly what caught the eye with this one. This information is really something that should be rolled into the services developed by NHS Digital like NHS Choices, or the up-coming NHS.UK.

Having a (semi) working service to show people makes it much easier to tell the story of why this should exist, and helps to lobby the institutions who should be providing this data.

We’re sure this story isn’t over here and look forward to the time when these services are easy to locate.

Thanks and the future

Thanks to everyone who turned up over the weekend and helped to make it such a welcoming, friendly event. Particular thanks to the volunteers who helped make things run smoothly, and the sponsors without whom we wouldn’t be able to carry on running these events.

A particularly large thanks goes to Becky for leading the organization and cat-herding this time, and doing by far the lion’s share of dealing with suppliers, venue and sponsors.

If you want to come to a future NHS Hack Day then you can follow us on Twitter, or sign up to our mailing list and we’ll let you know as soon as we schedule the next one - likely early in 2017.

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Big problems in health tech that get us excited

One of the great things about working in health is that there are no shortage of exciting, and potentially impactful problems to work on. At Open Health Care, we spend a lot of our time working to ease a couple of the big headaches around usability and data that the current state of health care technology gives clinicians.

Usability

First is the usability problem.

We’re hardly the first people to suggest that many, if not most of the digital tools that are provided for doctors, nurses and other key front line NHS staff struggle with usability. By default these tools tend to be overwhelming and unfriendly. They are hard to use, and at times downright dangerous.

At Open Health Care we believe that medicine is important enough to deserve the very best in terms of high quality usable software. In an environment where the costs of making mistakes is so high, clinicians deserve tools that help rather than hinder.

The great thing is that technologists understand how to make tools that are highly functional and even delight their users. It requires time, focus and a willingness to change the way things are done - but the design and development techniques are increasingly widespread and available to us.

There is no reason why we can’t do this for medicine - and indeed, the biggest part of what we do as Open Health Care is delivering that.

In the UK, our reality is that we are looking to streamline and improve the efficiency of our clinical services in the name of yes, better care but also saving the NHS money. Having usable digital tools that genuinely support the day to day work of those services with the capability to be frequently iterated will be a key plank of any successful transformation strategy as we look to re-design those services.

Data

The second big area that gets us excited is clinical data.

If we get sick, then the people and institutions who care for us know a huge amount about us. But that information is rarely available as data. It’s either literally on paper notes, or it’s in electronic systems that may as well be paper - stored in closed systems in unstructured formats that we can’t subsequently analyse or do computations over.

The opportunity cost of throwing away this information is huge. The truly revolutionary technologies and techniques that the digital age has provided us are fuelled by data. Those techniques work best when you can feed them with structured, high quality, granular data. Yet even at many world-renowned institutions in the NHS, the data infrastructure underpinning clinical activity is distinctly 20th century.

Access to high quality clinical data by default has a transformative potential for the NHS. Improving patient care and optimising our clinical services requires a real understanding of what we’re doing now - and that can only be obtained with data. Without that data, we have no idea whether we’re even making things better.

And that’s before we even start with the promise of driving research and science by providing them with easily accessible, high quality, computable clinical data.

How do we help?

What we’ve found at Open Health Care, is that when you get the usability right for the end user - the person caring for a patient, you can improve the efficiency and safety of patient care, while also capturing high granularity, research quality data as a part of routine clinical care.

This is one of the reasons we created OPAL - our Open Source platform for building clinical software applications. It pulls together the results of years of usability testing with real clinicians, along with all of the hard thinking that we and others like us have done about how to build robust digital tools for a health care environment.

Also built in to OPAL is the ability and the data modelling to collect the granularity of data required to enable us to provide high quality data through extracts or Open APIs. We’ve explored how to balance the clinical user need of speed ease of use with the system needs of quality data capture. Through a combination of pragmatic design, and frequent iteration, we’ve arrived at a range of design patterns that give us the opportunity to design systems that work in the real world yet still enable subsequent analysis.

For instance, we’ve built elCID - the first major application built using OPAL. It’s designed to help manage the care of patients with infections, and it has been in use at University College Hospital London for the last two and a half years in the inpatient and outpatient services they run for patients with infections. It is used by clinicians day to day to manage the care of patients, integrating with other hospital systems to pull key data from elsewhere in the trust, and it supports both clinical audit and service development.

During that time it has improved the efficiency of clinical practice - saving time every single day by reducing work required in the handover process for inpatient teams, and reducing significantly, the time required by Microbiology consultants to run their liaison service to other parts of the trust - while providing robust documentation of that process for the first time.

It has supported the development of the OPAT service - freeing up beds by allowing patients requiring IV antibiotics to be treated as outpatients, saving the trust £1m per year. It also allows us to provide clinic managers realtime dashboards and management reports about their activity, enabling them to make decisions with data that was previously unavailable to them.

In addition to this, data from the system has supported many clinical audits - making the process of collecting data to analyse significantly faster, as well as one published academic paper, two more in peer review, and six conference abstracts.

How does it work?

Open Health Care provide digital tools to NHS institutions that help clinicians to deliver better care. We charge for support, customisation and integration work, but we don’t charge for a license fee - all of our software is Open Source.

We provide either installations of existing products we have developed, or build bespoke solutions for the needs of the individual organization we’re working with.

If you are interested in fining out how to get elCID at your organization, or have a project that involves clinical usability and data then do drop us a line - we’d love to hear from you.

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Happy Birthday to OPAL!

Last Saturday 28th May 2016 marked the third birthday of OPAL - the Open Source framework we created to help developers create high quality clinical applications. We’ve come a long way since the very first commit back in 2013 so to celebrate we thought now would be a great time to take a look back over everything we’ve achieved.

Early days

For the first few months the lead developer on OPAL was the awesome Peter Inglesby, who made that very first commit, and worked with Drs Pollara, Marks and Noursadeghi to craft a Patient List system for infection patients at UCH. We met each week in the old Library room at HTD for a show and tell and figured out what the next sprint would look like.

The interface changed almost weekly back then as we tried to figure out how best to replace the menagerie of Word documents, T-Cards, Access databases and Excel spreadsheets that the teams were currently using as patient lists. As you can see below, even three years on, the Patient List components of OPAL are still recognisable from those first few months!

Making OPAL a Framework not an Application

Even at the beginning we knew that we wanted OPAL to be more of a framework than an application. By October 2013 we started moving the UCH specific elements out of OPAL, refactoring it for reuse. We set about moving application specific business logic into elCID (the first OPAL application), allowing OPAL to be the generic platform for the services we build.

OPAL would provide a sensible robust default configuration along with a core data model, reusable common components, UI components, and a clear path for integration with other systems and standards. Meanwhile individual applications built with OPAL would provide specialised domain logic for particular tasks, clinical specialties, or customisation for individual installations.

Deployment to an actual NHS Hospital

In January 2014 we were ready to deploy elCID to a real NHS hospital - just eight months after starting the project. Since then it has been used to manage inpatients and outpatients for HTD and the Infection and Microbiology teams at UCLH.

Digital services are never finished though - and we’ve iterated and improved both elCID and OPAL frequently. OPAL alone has racked up 19 releases and almost 2,500 commits since we began. During that time we’ve worked to turn our vision for a robust Open Source framework for building clinical web applications into a reality.

Taking OPAL to NHS Hack Days

One of the big tests for how far along that path we are is how OPAL has performed as a tool for building projects at NHS Hack Days. Hack days are a great way to stress test developer tools. They reward well-thought-out APIs and good documentation, giving you a great insight into how much they help or hinder developers.

The first OPAL project at a NHS Hack Day was back in May 2014 when Dr Gabriele Pollara brought a team together to try and add some extra features to OPAL and elCID. Even though the changes from their fork of OPAL were never merged back into the main codebase, it gave us plenty of insight into where we had the coupling wrong between framework and application, and places where could improve the APIs or make the documentation clearer.

Four months later when the 8th NHS Hack day rolled around in Leeds the codebase had improved significantly - with a project to design a handover tool for Renal teams coming joint first:

This was the first time we had built a brand new application from scratch using OPAL, and it gave us a clear head start over hackday projects that had had to start from nothing.

Over the next year, projects like eCDR and travelalerts were a great benchmark of how OPAL was progressing. New developers were able to get to grips with it and start building on top of it over the course of just a weekend. The framework was obviously maturing.

In the most recent London NHS Hack Day we saw two projects building on top of OPAL - A digital anaesthetic chart that pulls and displays observation data from a anaesthetic monitors, and the eventual winner - a Raspberry Pi based EPR in a box.

It was particularly exciting to see two brand new - and completely re-skinned OPAL projects built over one weekend and to get lots of feedback from all of our friends in the NHS Hack Day community.

The last few months

The last few months have seen OPAL leap forward in terms of code quality and depth of features. In large part this is thanks to the hard work of Fred Kingham - who has taken over as lead developer for the project. The upcoming 0.6 release will see many improvements. We’ve refactored form helpers to make it easy to embed forms. Added new Patient detail views and a new Patient List module to make OPAL even more customisable. We’ve also added in an integration layer for connecting to other hospital systems. All this coupled with even greater performance.

We’re not done yet though! We’re looking forward to improving the documentation to make it easier for new developers, we’re updating our core clinical models, improving the way in which we guide users through complex clinical pathways, adding further UI improvements for mobile devices along with much more as we move towards a 1.0 release.

If you want to know more about OPAL, or about the work that we do at Open Health Care building digital tools for clinicians, drop us a line - we’d love to hear from you.

Photo credits: Will Clayton

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