What upsets me is the lack of joined-up thinking in research. We have the UKRI funding dozens (ie around 200) PhDs in doctoral schools looking at AI in healthcare and diagnostics, yet the students can't get access to the data they are supposed to be studying. Research funders (including the publicly-funded UKRI) are now being asked to add six months or even a year onto data-based research funding to cope with the delays, and the needless duplication of various data-holders each requiring researchers to jump through the same hoops over and over again. Worst of all, most of these data-holders sincerely believe they are doing the right thing, like bouncers at the door turning away everyone in the queue for wearing the wrong footwear, while the nightclub stays empty.
I agree that partnerships are needed for advancing a field of science. But I also think we need to be careful not to box our desire for innovation into current theories that are led by pharma companies. To truly understand a problem, you need to truly understand the problem. That means looking at it from all angles and all angles post onset and ongoing. Too often innovation gets focused on the later and not understanding that the early stages sets the stage for the later. Oxidative stress is an early factor in all neurodegenerative diseases....should we not be focused more here? There is interesting work being done here but not by the large platforms / big data.
I agree, mostly. The point about GDS is particularly significant - a colleague mentioned this to me the other day. From a data pov, NHS needs to standardise more of how it works: the 200 units need to behave like franchises, not competitors and the capability needs to be built centrally on how to leverage the data.
I used to do this sort of thing for Cap Gemini. It's not that hard if you can get into the right position. I've even tried volunteering (to avoid the silly pay constraints), but got nowhere. You cannot organise to manage access to such large datasets without an internal capability that can stand up to the suppliers. Atm, there's a lot of noise about FDP and OpenSAFELY, but no sane governance of how/where they should be used. I suspect that FDP in particular misses many issues about integration (eg most of the issues are with edge systems, not the integration technology itself).
As to the data governance, I continue to believe that there's a lot of opportunities to use the data of deceased patients.
I agree with your franchise metaphor, if underpinned by common standards for seamless connections through the ecology of systems, hardware and software and fonnecting to social care too
given enough scale, the nhs may avoid silly security holes like this: https://bit.ly/3DkHS0A, which follows the dangerous pattern identified by the late Ross Anderson a decade or so ago. The labour costs would be much lower, too as the delivery pattern of a large internet native firm could be followed.
I worked on a number of PMS (patient management systems) years ago in both London and Leeds hospitals. To extend your city state analogy further I found fear and suspicion between hospital departments and even within departments amongst different consultant lead teams - the district and parish councils in your scheme. No one had an overall perspective so it was virtually impossible to work/plan collectively. I understand much of these outdated practices are still in place and will require attention before even considering AI tools
There are also data science companies in the UK that are able to do the work. My son works for one in the UK and they are working on projects involving medical data in Canada. Private partnerships in many areas of reasearch and development has to be the future for NHS, as it is for any business whose core skills are best focused on what they do best and partnering with others who have other necessary skills as needs be.
Hi Rory - really interesting piece, sadly an all too familiar set of factors holding back innovation and adoption of digital and data. It's not that the NHS can't innovate digitally -- there are many, many examples big and small -- its scaling what works that remains the bigger challenge. I slightly worry that the GDS approach you suggest sounds a lot like NHSX. If you were interested in exploring further -- more from a clinical and NHS digital transformation stance -- I'd love to extend an invite to attend Digital Health Rewired 2025, 18-19 March, NEC, as our guest. Jon Hoeksma, chair Digital Health.
I’m at a loss to understand the fear of so-called prying eyes getting access to our data. Does anybody - even a 77 year old like me - not understand that every time we go online, search Google, access FaceBook, post happy family pics to Instagram, place an online grocery order, we hand our data on a plate to big tech? Does it stop us? No. So why are we so fearful of the NHS having access? I suspect we’re not, but the bureaucrats think we are. Attitudes have to change.
What upsets me is the lack of joined-up thinking in research. We have the UKRI funding dozens (ie around 200) PhDs in doctoral schools looking at AI in healthcare and diagnostics, yet the students can't get access to the data they are supposed to be studying. Research funders (including the publicly-funded UKRI) are now being asked to add six months or even a year onto data-based research funding to cope with the delays, and the needless duplication of various data-holders each requiring researchers to jump through the same hoops over and over again. Worst of all, most of these data-holders sincerely believe they are doing the right thing, like bouncers at the door turning away everyone in the queue for wearing the wrong footwear, while the nightclub stays empty.
I agree that partnerships are needed for advancing a field of science. But I also think we need to be careful not to box our desire for innovation into current theories that are led by pharma companies. To truly understand a problem, you need to truly understand the problem. That means looking at it from all angles and all angles post onset and ongoing. Too often innovation gets focused on the later and not understanding that the early stages sets the stage for the later. Oxidative stress is an early factor in all neurodegenerative diseases....should we not be focused more here? There is interesting work being done here but not by the large platforms / big data.
I agree, mostly. The point about GDS is particularly significant - a colleague mentioned this to me the other day. From a data pov, NHS needs to standardise more of how it works: the 200 units need to behave like franchises, not competitors and the capability needs to be built centrally on how to leverage the data.
I used to do this sort of thing for Cap Gemini. It's not that hard if you can get into the right position. I've even tried volunteering (to avoid the silly pay constraints), but got nowhere. You cannot organise to manage access to such large datasets without an internal capability that can stand up to the suppliers. Atm, there's a lot of noise about FDP and OpenSAFELY, but no sane governance of how/where they should be used. I suspect that FDP in particular misses many issues about integration (eg most of the issues are with edge systems, not the integration technology itself).
As to the data governance, I continue to believe that there's a lot of opportunities to use the data of deceased patients.
I agree with your franchise metaphor, if underpinned by common standards for seamless connections through the ecology of systems, hardware and software and fonnecting to social care too
given enough scale, the nhs may avoid silly security holes like this: https://bit.ly/3DkHS0A, which follows the dangerous pattern identified by the late Ross Anderson a decade or so ago. The labour costs would be much lower, too as the delivery pattern of a large internet native firm could be followed.
I worked on a number of PMS (patient management systems) years ago in both London and Leeds hospitals. To extend your city state analogy further I found fear and suspicion between hospital departments and even within departments amongst different consultant lead teams - the district and parish councils in your scheme. No one had an overall perspective so it was virtually impossible to work/plan collectively. I understand much of these outdated practices are still in place and will require attention before even considering AI tools
Also, as a patient I know systems are circumvented as a pragmatic shortcut where clinicians are unable to locate information in appointments
Is there anything like Jisc, an organisation that promotes good practices and brokers deals for the higher education sector?
Lack of standards and silos of MH and physical health are also barriers from my viewpoint as a patient.
https://www.jisc.ac.uk/
There are also data science companies in the UK that are able to do the work. My son works for one in the UK and they are working on projects involving medical data in Canada. Private partnerships in many areas of reasearch and development has to be the future for NHS, as it is for any business whose core skills are best focused on what they do best and partnering with others who have other necessary skills as needs be.
Hi Rory - really interesting piece, sadly an all too familiar set of factors holding back innovation and adoption of digital and data. It's not that the NHS can't innovate digitally -- there are many, many examples big and small -- its scaling what works that remains the bigger challenge. I slightly worry that the GDS approach you suggest sounds a lot like NHSX. If you were interested in exploring further -- more from a clinical and NHS digital transformation stance -- I'd love to extend an invite to attend Digital Health Rewired 2025, 18-19 March, NEC, as our guest. Jon Hoeksma, chair Digital Health.
I’m at a loss to understand the fear of so-called prying eyes getting access to our data. Does anybody - even a 77 year old like me - not understand that every time we go online, search Google, access FaceBook, post happy family pics to Instagram, place an online grocery order, we hand our data on a plate to big tech? Does it stop us? No. So why are we so fearful of the NHS having access? I suspect we’re not, but the bureaucrats think we are. Attitudes have to change.