Rebecca Cosgriff:
Hi, I'm Rebecca Cosgriff. I'm the programme director for an initiative called the Data for Research and Development programme at NHS England.
David Seymour:
And I'm David Seymour. I'm director of data partnerships at Health Data Research UK.
Rebecca:
So David, we're here to talk about health data in the context of the NHS. And I just wanted to ask to begin with what your recollection of the health data ecosystem from before my programme even came into being and some of the challenges that we kind of face as either people trying to develop infrastructure or people trying to access data that's generated by the NHS. So we're talking, what were things like around 2021?
David:
Yeah, well, I suppose I rolled the clock back a little bit earlier than that from my involvement. So I first got involved with Health Data Research UK as part of a thing called the Digital Innovation Hub Programme, which really looks at developing data infrastructure for industry in particular through the Industrial Strategy Challenge Fund to enable better use of the UK's health data assets across the piece. And as part of that, we actually started to do an extensive design and dialogue phase with industry and other users to understand what people wanted. And one of the things people wanted was greater visibility of what the actual data assets were. But then they also wanted expert help and support to actually use that data effectively and make sure we got the standards in place to redeploy that technology across different parts of the ecosystem.
And I guess it was on the back of the Digital Innovation Hub Programme as that was drawn to a close that really gets the data for R&D programme sort of came on board to hopefully build on a number of those successes through the Health Data Research Hubs, the Gateway, which we'll talk about no doubt later, and the UK Health Data Research Alliance.
Rebecca:
Yeah, and it's something that sounds very familiar to me in terms of what we get from stakeholder engagement, whether it's industry, so pharma, SMEs, tech companies, or academic researchers and medical research charities, that they appreciate that you can do incredible things with NHS data. You know, you've got a longitudinal healthcare record for a single payer system that has a huge wealth of ability to derive insights across disease areas, help with diagnostics, early detection, but people really, really struggle or have done in the past to understand what data exists, where it exists, how to access it, and then can spend a lot of time bringing data together in a fairly manual way that's not easily reproducible for other projects. That must be something you've heard from people during your time at HDR UK.
David:
Yeah, absolutely. I guess the other big change as well, probably over that period, not only of course the global pandemic, but actually also within England, especially the sort of the shift from a model where previously the sort of the datasets would be sent out to researchers to users to model where actually that's then brought all under one place. I think what Genomics England will refer to as a sort of reading library rather than a lending library type approach, but that also then allows you to start building those benefits in terms of the economies of scale and skill around that sort of data curation activity and making that available as well as obviously protecting privacy.
Rebecca:
Yeah, and I guess the background to a lot of that policy move from the Department of Health away from data sharing, as you say, that lending library approach where people can take de-identified data that has been very robustly checked in terms of what data is going out and who's receiving it, but fundamentally the data leaves the NHS to be worked on external to it by researchers, whether they're from academia or industry, and shifting that to that reading library model where people come to the data rather than the data going to them has really been driven by a desire to make sure that when we're working with health data for research purposes, that it's done in a way that is acceptable to and transparent for patients and the public about, you know, it's ultimately their data that we're talking about and dealing with.
And it's been really interesting during my time working on the Data for R&D Programme that when we talk to patients and the public, whether it's using an analogy like a reading library or a data museum or whatever it is that we arrive at for that particular audience, people feel so much more comfortable with this idea of the research is entering a secure environment, they've been vetted, they've had a data access committee review the aims and the methodology for the project, and then all of the work is done in that environment. And from my point of view, it's kind of additionally valuable because it means that the work done on the data stay within the NHS. So if there's curation or added value in terms of improvements to data quality that all stays in a way that can be reused by other researchers, which is fantastic. And did some of the data hubs follow that kind of model or do you feel they were pioneers that might have helped get us to a point where we had a data access strategy rather than data sharing?
David:
Yeah, I guess it was a combination of factors really. But I mean, certainly talking of Pioneer, which actually is one of the Health Data Research Hubs, that actually now is part of the West Midlands Secure Data Environment very much about that mould of building that capability. And I guess both in terms of sort of the technology, but also the data assets, but also the sort of domain expertise and bringing together clinicians and researchers and data scientists to actually really deliver that service for industry, for academia, for other parts of the NHS is definitely very much the case. And that was very much the model for, for say, the Health Data Research Hubs was either to partner with existing secure data environment providers, or obviously, where necessary to build their own, to make sure again, that that data wasn't disseminated. And I guess public involvement was a very strong part again, of the Health Data Research Hub Programme, which is great to see the Data for R&D Programme taking on as well.
Rebecca:
Yeah, and you've kind of already started to mention some of the way that the legacy of the Hubs is being preserved through the Data for R&D Programme, which is looking to invest in a number of different initiatives to basically make data more rapidly and securely accessible for research purposes across the NHS. And just briefly, the way that we're doing that, which obviously you're very familiar with is by investing in establishing the NHS Research Secure Data Environment Network. And that network includes the national secure data environment, which is housed by NHS England, as well as a small suite of delivery teams based around England, that run SDEs that collectively cover all of England. And you've already mentioned that kind of Pioneer is preserved in the West Midlands Secure Data Environment.
And we've got other ways that previous infrastructure investments, whether they're by HDR UK or other investors, are being preserved and kind of catalysed to go even further through the Secure Data Environment Network. And I think that's really one of the ways in which it felt like a no brainer for the Data for R&D Programme in NHS England to work in a really concerted, collaborative way with HDR UK, kind of beyond speaking to HDR UK as a stakeholder to influence our thinking that we've actually gone a few steps further, I would say.
David:
Yeah, no, absolutely. I think that's been a real sort of particularly journey over the last, I guess, 18 months or so on that. And I think, again, just to call out, I suppose Discover Now, which was Northwest London, sort of helped real world evidence hub now obviously part of the London secure data environment. I think again, the British Heart Foundation Data Science Centre who have collaborated very closely with what was NHS Digital now, NHS England, to really build that national capability within the NHS England Secure Data Environment are all two great models alongside also DATA-CAN, the cancer hub, again, also working within that NHS England Secure Data Environment.
But perhaps the sort of, I suppose, the bit that's trying to tie it all together then is obviously the Health Data Research Gateway to bring that discoverability and accessibility to the data in a more consistent and streamlined way.
Rebecca:
Yeah, and it was one of the crystal clear requirements that came to us when we were doing either literature reviews or fresh stakeholder engagement when we were kicking off the Data for R&D Programme or laying the foundations for it in 2021. The programme formally launched in April 2022 was that need to get the first step in the journey for researchers right. And that first step has to come with a single route to understand what data exists and where across the NHS health data landscape. And obviously our goal is to have the NHS Research Secure Data Environment Network be the default means for accessing NHS data for research purposes. And whilst the SDE Network is working towards having a single operating model running across all of the secure data environments and federated approaches to actually bring together data for analysis across multiple SDEs, we had to get that first step in the journey right, which is basically data discovery.
And when we looked at what work had already taken place, obviously we couldn't miss that HDR UK had already done a huge amount of work developing the Gateway. And so it was really fantastic that we were able to basically agree to work together to make sure that the Gateway could serve the requirements of the SDE Network, but also that the SDE Network could dock into an asset that's UK wide, so that we weren't creating something brand new that was only serving the SDE Network. And it would make sense holistically for researchers, even if they need to access data from across all areas in the UK.
David:
Yeah, and I completely agree. I think that's a really, really important point that we again saw during the COVID pandemic response, which is how to get the four nations of the UK working together on there with their health data. And in many ways, England catching up with the other nations in terms of their security around data access, but also the availability of different data assets, such as primary care in particular.
And I think again, to be able to build on that and to have a portal or a platform that allows you to discover and request access to those in one place is obviously a real benefit. I guess one of the challenges that comes with it, and with any developing any sort of platform for such a wide range of uses is how do you make sure it really fits, particularly industry's needs, when particularly if they've been used to, you know, having their own, getting the data from somewhere else and developing their own tools, platforms, using their own sort of compute power, how do we make sure we can at least mirror and ideally enhance that offer?
Rebecca:
Yeah, and it's something that we grapple with a lot in the Data for R&D Programme and collectively with HDR UK and kind of other others working in this system is how do you balance the trade offs when you are understandably asked on the one hand for consistency, transparency and predictability around what data are available, where in what timeframes and at a certain cost? But on the other hand, research is very heterogeneous, and it has to evolve with the changing needs of the population.
So that means our users need agility as well. So how do you balance consistency with agility, I think is something that that we grapple with really often. And I think it's one of the reasons that our partnership approach works so well, because if nothing else, it means that from the Data for R&D Programme side, working in a fiscal context where there's not huge amounts of money available to invest in health data, even though I think it's universally recognised to be an important asset for the UK to deliver benefit for the NHS and directly to patients and the public, that we have to really focus in on only doing what only we can do.
And there are certain things that the Data for R&D Programme being housed within NHS England is really well placed to catalyse. And I think one of those things is working directly with these NHS led secure data environments to get them up and running and making sure they're adopting data standards that are consistent, for example. But we are able to leverage a really talented team working with HDR on The Gateway in a way that adds value to what we're doing without costing more to the system because HDR already had a mandate to take it forward.