Industry response to NHS draft data strategy

The healthcare IT industry responds to the draft data strategy revealed by NHSX. Overall, the strategy seeks to bring people – citizens, patients, and health and care professionals – closer to data. Doing so intends to develop a more sophisticated data infrastructure that is built with the NHS at the heart, empowering research, supporting innovators and improving decisions made about patient care.

The industry responds to the strategy with their feedback, and what they hope the final version will look like.

Andrew Meiner · MD & Chief Commercial Officer, Silverlink, said:

“As someone who has been somewhat of an evangelist for open data in the NHS, I welcome the draft data strategy. Transparency over how and why patient data will be used is essential for consensus building and protecting trust. Giving the public an opportunity to review and contribute to the final strategy is crucial to securing that trust and consent, avoiding a repeat of the care.data debacle.

Right now, the NHS has a real problem with the quality of data it’s creating and consuming, which hinders the potential of innovative new technology such as AI and machine learning. For this to be rectified, there needs to be agreement on common data standards; FHIR and openEHR.

As we now make the move towards more joined up care, US suppliers currently dominating will reveal to be too rigid and potentially incompatible with integrated care systems, doing little to support these data standards. Instead, we need proper investment in open data and collaboration between companies to build a data infrastructure that is purpose built for the NHS.”

Tom Whicher · CEO, DrDoctor, said:

“Empowering patients to not only control their own data but also to manage their relationship and set out how they want to engage with providers is largely missing from the strategy. This is  arguably as important as the commitments outlined to enable patients to have system wide access to their results and medication. Such deeper engagement can enhance data quality and provide a more patient-centered experience – both of which are crucial if we are to make the most of data about our nation’s health. Such an approach also provides healthcare services with the platform to harness data and use innovations such as AI to deliver hyper-personalised care that delivers value to the patient, however they engage with healthcare services.”

Hassan Chaudhury · Digital Health Specialist, Department for International Trade, said:

“I welcome the document and its timing. GPDPR has thrown up lots of concerns and we’re perhaps just over a month away from publication of the findings of the Goldacre Review. There are some excellent points made throughout too, for example on privacy enhancing technologies (PETs).

I do think there is a missed opportunity to engage with the central challenge in this entire debate which is about Industry accessing health and care data. Ask the public and professionals about enabling data access and sharing for their own treatment (i.e. for direct care) and they’ll agree. Ask them about data access for bona fide research to named and approved researchers for secondary use under strict controls and they’ll typically agree. There’s little to no debate there. However, ask them about Industry access to their data and it’s clear there are unresolved concerns that Industry can’t solve alone. It all becomes clouded when questions about data access outside of these two areas and that is where we need far more clarity.”

Richard Strong · Vice President & Managing Director, EMEA at Allscripts, said:

“The renewed commitment and further detail of separating a person’s data from the application layer is long awaited and much needed. The focus on the data being not only accessed and updated by third parties that work collaboratively, as well as health and care providers themselves is a massive step in the right direction to enable more open, flexible and usable systems that haven’t always existed in the NHS.

“We have long been advocating ‘a more modular approach to EPRs, avoiding vendor lock-in and creating a more dynamic and responsive market’ as outlined and have seen first-hand by working with our NHS partners that it’s the only way that innovation can take place at pace.

“We hope that this new approach is given the airtime that it needs to not only enable NHS trusts to be more forward thinking and to demand more from suppliers but for the effectiveness of the entire ICS landscape to work in an open and integrated way. The impetus is now there from the centre and it’s time for direct engagement with suppliers  and health and social care professionals to understand the best route to change.”

Rachel Murphy · CEO at Difrent, said:

“I’m pleased to see that the draft Strategy leads on putting patients in control of their data, and makes the data that the system holds about them more accessible. You and I as users of the NHS own our data, and should be able to choose how and to who we donate it. I’m a real believer that the majority of people will gladly put their trust in the NHS and donate their data if they understand the value to them and the wider population in doing so. For this to happen, open, transparent and accessible communication is vital. Hopefully this strategy is a step change towards user engagement being given more careful consideration.”

Tomaz Gornik · CEO at Better and Co-Chair of openEHR International, said:

“We are very excited about the change in policy as described in this document. Separating the data from applications and storing it in a vendor-neutral format is at the core of our vision. It is great to see that this concept which we have been championing for over a decade has now become policy not only in the UK, but in other parts of Europe as well. We can attribute this change to the fact that COVID has accelerated the data agenda in healthcare. It is now clear that health and care data is for life, not for one application, hence the need to separate the two. At Better, we have over 120 customers in 16 countries proving that this concept is the way forward.”