I sensed that we were on to something and wanted to be a little bit more independent than I had been when I was with Ocean. I was quite excited to see some of the tech advances that companies like Better were starting to introduce and I guess I wanted to take my own interests in a more technical direction. I’m a clinical informatician, but I have done quite a bit of programming and I’m used to playing around with APIs and doing techy stuff; and I wanted to do a little bit more of that.
In particular, I felt we were in a position to start to attract SMEs and new companies coming into the market. It was the time when everybody was building an app for everything on the back of the iPhones and Android – there was a huge suite of companies, certainly in the UK, but also around the world saying, “we’ll solve all of your patient health problems with apps”.
You may have a fantastic app, but getting it integrated within systems can be extremely difficult.
That was why I set up freshEHR, really, just myself and one other colleague, that’s where it all started.
So how did you transition from being a GP?
I was a GP for 15 years in Glasgow. I’m in a vintage where there were no PCs – when I qualified as a GP, they didn’t exist. The IBM PC had literally not been invented. I was aware of computers when I was at school, but I couldn’t see how they applied. Maybe if I was going to do some research or accountancy or maths or something, but it didn’t make any sense to me at the time.
Suddenly, people started talking about word processors and databases, and I started to see how computer science and technology could be useful.
Early on as a trainee GP, there was a lot of paperwork and so much drudgery, and I thought if I had something that could produce labels, if I had something that could write or print prescriptions, rather than having to write them all by hand – that’s going to transform this world. So that’s what caught my attention and I started to teach myself to program and became associated with a national GP system project in Scotland called GPASS, which lasted for 20 years.
Had you been working with the precursors to openEHR and FHIR before?
No. I came across this almost completely by accident. I got myself into programming and had a small business writing accounting software for GPs, so at one point I was doing two jobs.
I thought, this is crazy, being a GP is insane – even 20 years ago, it was an insane job and I wasn’t enjoying it anymore, so I resigned from my practice.
I had some ideas about a much better user interface for the GP system, which I wanted to work out, so I started trying to do some programming and then thought, well, I can’t be bothered writing information models or clinical content descriptions for medications or allergies or all these things, they must be out there on the internet. At least the Internet had started by this stage! That’s when I came across this weird openEHR thing and I honestly didn’t understand it at all.
I just thought, this is making my head hurt! Even though I was pretty familiar at that point with information architecture, it completely made my head explode. But then for some reason I went back to it and I got myself involved in the community,
I met the originators – people like Thomas Beale, Sam Heard, Dipak Kalra and David Ingram – but I wasn’t one of the pioneers, if you like, of that whole space. I came in and started working with Ocean as part of the English National IT Program to do some data modelling for them.
I worked on a project in Moscow, with the guys from Slovenia. It was a fantastic experience. I learned a huge amount, most of my education about openEHR came from colleagues like Sam Heard, Heather Leslie and Tom Beale. I learned 90% of what I know now from them, they were really pioneering this at that time.
How would you explain your work to a layperson?
We recently had a fantastic workshop with the Faculty of Clinical Informatics where we attempted to explain the current state of health IT, which is lagging behind other markets. Typically, you would go and buy a system for your GP, hospital, or paediatric needs. By ‘system’ people mean an application or app along with its data store and data management components. You purchase the entire package and then acquire the app from the company, which collects data through the user interface and stores it in its own database.
This approach however, has drawbacks. You may become locked into a single vendor and every vendor may have different ways of representing or thinking about a particular concept like allergies for example, or blood pressure. From a patient’s perspective, it would be ideal to have a single system, but that is not feasible or desirable as it would create a monopoly.
The goal is to have the best applications for clinicians and patients, but make it feel like it’s all integrated and talking to each other. openEHR aims to solve this problem by separating the data stores from the apps and making the data patient-centric.
To make this work, openEHR must be able to manage clinical and care data from any angle and handle information that is incredibly complex, including records of transfusions, vaccinations, health care problems, and so on. Currently, the process of capturing all this information from clinical experts and putting it into the developer’s head is a major challenge in the world of healthcare.
openEHR’s solution is to make it open-source and allow clinical informaticians to capture the data and store it in a library of components that any openEHR-compliant data store can understand. The goal is to democratise the process and allow stakeholders from around the world to give feedback on the components and ensure they are correct.
These components, called archetypes, are built and maintained by openEHR International and are freely available. While the activity has largely been a pro-bono effort, the organisation is looking at ways to ramp up its activity as it is time-consuming and difficult to get it right. openEHR has been a small organisation until now, but its efforts to improve healthcare data management are commendable.
Do healthcare organisations ever ask you to build a specific archetype?
The big shift is happening now. Up until recently, most decisions to deploy openEHR-based technology were made by traditional health IT system vendors who saw this mostly as just a better technology from what they were doing before.
Moscow was one who decided to change this, with the largest deployment: a system used by 12 million people, which includes GP services and outpatient services. Then a few years ago freshEHR helped build a GP system that is being used across the Nordic countries with great success. The Nordics are particularly interesting because they have a focus on openEHR, and all the leading vendors in the region now use openEHR technology.
freshEHR has played a role in a new shift towards this ‘patient-centric, open platform concept, which is now gaining traction in the UK, with national projects in Scotland and Wales, and regional projects in England including the ROSI project in the east of England and a similar project in London. These projects are driven by NHS providers who are looking for ways to manage care planning and integrated care across their regions.
With 50,000 end of life care plan records already on One London, the focus on next steps and how quickly it can be done is being looked at. 80 clinicians from across London are meeting to discuss the next steps, including the possibility of implementing sickle cell support, frailty and dementia support, and support for children with long-term conditions who bounce between different hospitals and services.
The exciting part is that all of these initiatives could be implemented quickly because much of the information is already being captured or has the capacity to be captured. The communications challenge will be addressed, making this a truly patient-centred experience.
Does it feel like there’s been a sea change?
Absolutely. From my perspective, care planning is turning out to be a sweet spot. Integrated or coordinated care is something that we know is done very badly. FHIR, a great tool for exchanging high value parts of the record such as drugs, allergies, and labs is widely used in all the projects I’m involved with, and is not seen as competition. However, FHIR was never designed to help store data or have the detailed coverage of record components required to underpin detailed care planning, or an entire patient record,
Further afield, Catalonia is constructing its healthcare environment around an openEHR platform-based record with a patient-centric design.
Jamaica has started on a similar strategic journey alongside a more typical EPR procurement.
We have mentoring and support contracts with the Karolinska hospital in Sweden, and Catalonia. We are working with the University of Manchester and NHS England on a pharmacogenomics project. Additionally, we are also working with Wales, London, and Essex.
We have recently spent a lot of time preparing clinical modelling training videos available through Rosaldo, as we see the need to rapidly upskill our clients, while we step back and provide more of a mentoring role.
The big question that we are always asked is whether companies like Epic and Cerner will ever use openEHR. But that’s not where the battleground lies. I believe that these companies will reach their high level watermark and eventually start to shrink. We are now at the point where some organisations are already doing this, such as some ICS in England who have asked Epic to manage their community services. But others, like London, have had enough and want to do things their own way. So care planning solutions will become patient-centric, expanding their scope beyond the hospital and into a natural space that focuses on the patient. The hospitals will manage the patient’s needs while they are in the hospital, and the care planning solutions will take over when the patient is back in the community.
openEHR is more versatile and flexible because it is multi-vendor and not limited to a single technology. It provides a set of components and tools that allow other people to build a more flexible system. The idea behind openEHR is to split the app from the data. The apps should be designed to help the user do their job, such as a GP app or an app for an orthopaedic surgeon. The data, however, can be massaged to suit other circumstances.
This flexibility is the breakthrough for me. It allows clever people to write great apps without having to get bogged down in the complex and often painful world of health data.