A growing group of leading NHS trusts in and around London have begun making use of OpenEHR to capture and manage genomics data as part of the high-profile 100,000 Genomes Project.
One of the leading informatics managers working on the project in London, says that national genomics initiative has quietly resulted in the introduction of OpenEHR into 17 trusts ‘by stealth’.
A total of 17 NHS trusts, including Great Ormond Street Hospital, participating in the 100,000 genomes project, have started, or will soon start, using the open source EHR platform for taking part in collecting genomics data.
The trusts are not about to switch away from using their current EPR of PAS systems but the Genomic England project is providing them with exposure to OpenEHR for the first time.
The 100,000 genomes project was launched by the government in 2012 to help start the UK genetics industry. A central objective is to sequence 100,000 patient genomes and then leverage the resulting database to drive research and discovery of new therapies.
The agency established to run the project was Genomics England, which invited consortiums of NHS trusts to apply to establish 13 genetic medicines centres (GMCs) to collect gene samples and accompanying clinical data from participating NHS trusts.
Of the 13 Genetic Medicine Centres chosen, each delivered by a consortium of trusts, three are in London: North Thames, West London and South London. Two of these, North London and West London, took the decision early on to use OpenEHR.
“Consortia were invited to bid for IT capital to build the informatics infrastructure they needed, explained John Reed, the informatics manager for North Thames Genomics Medical Centre, which includes Barts Health, Great Ormond Street, London North West Healthcare, Moorfields Eye Hospital, Royal Free, Royal National Orthopaedic Hospital and UCLH.
Speaking at a recent conference on OpenEHR in Salford, Reed explained: “GOSH is the lead trust in North London and collecting over 15,000 of the 100,000 genomes in the project.”
Reed outlined the challenge: “When Genomics England was established they employed informaticians to describe the data set that needed to be captured – pretty much what you’d have in an EHR.
“We then decided that it made no sense to build an informatics infrastructure that gets thrown away at the end of the project, so we looked at other approaches, including OpenEHR.”
OpenEHR was chosen because of its open standards-based approach, making it suitable for use with both enterprise-wide and best-of-breed EPRs. “OpenEHR provides semantic interoperability and vendor-neutral data archiving,” he added. “It’s been proven in very large deployments – so we considered it to be a very low risk.”
“We’ve had some pushback from CIOs at some NHS trusts – some not interested and others were.”
Reed added: “So what we decided to do was to implement OpenEHR at all of our partner trusts. The plan was not to duplicate but to help trusts begin to use openEHR standards, by stealth really.”
Reed told the conference that a big advantage of OpenEHR is that it’s clinical modelling and mapping, already went a long way to support the genetics data set needed. “Of the Genomics data 70% was already in OpenEHR and 30% needed to be modelled.”
The front end application that enables researchers to access data from Genomics England is an application called Genie developed by West Midlands GMC, which is also now looking at rolling out the OpenEHR system.
“We’re also trying to persuade Genomics England to move to open standard, and working with NHS England and NHS Digital,” said Reed.
“There will soon be 17 of the biggest trusts in the country running OpenEHR thanks to this project,” observed Reed. And he suggests that this provides a foundation that could be used to meet other challenges.
Looking past genomics project, due to run until September 2018, Reed suggested the footprint of OpenEHR created could also be applied to sharing records across the capital, contributing to the development of federated clinical records across North London for research and patient care.
“We’ve been asked to work with our local CCG to look at how this could be achieved. It wouldn’t take much to deliver a federated record using the OpenEHR platform. Though in London you are up against other competing architectures.”