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By Janeiro Digital | November 11, 2021

In episode 6 of The Decentralized Web podcast, Jonathan Bingham is joined by Monica Jones from Health Data Research UK (HDR UK), where she is Chief Data Officer at DATA-CAN, Associate Director of the North Better Care Partnership and contributing author to the UK Department of Health and Social Care’s seminal Data Saves Lives policy. Monica and Jonathan explore interoperability and the challenges of siloed systems and information sharing within healthcare systems, plus the pivotal role data played in the NHS fight with COVID19, in a wide ranging and thought provoking discussion.

Joining the dots: Building a Longitudinal Patient Record

The key to using data effectively in healthcare is ensuring every stage of the patient journey is working with the same data set. Building a longitudinal patient record – that brings together primary care, community care, and acute care, and mental health, all together is key for Jones. Drawing on the example of the Yorkshire and Humber Care Record, one of a number of Local Healthcare Record Exemplars that have sprung up in the last few years, a new model for joining up health care data is emerging.

Yorkshire and Humber covers almost 5.5 million patients, with a diverse mix of socio-economic backgrounds, as well as a very mixed bag in terms of the type of technology that’s deployed. Multiple different sets of electronic patient records, some homegrown, some vendor provided, meant they had to go for a bottom up approach, creating a shared care record using the interoperability between systems, rather than a centrally imposed system, like the doomed National Programme for IT. The system is live across Yorkshire and Humberside, and working well: an ambulance heading to the hospital can inform the hospital on the patient’s identity and situation, saving on average 6 minutes per patient, in a busy acute trust, it all adds up.

Whilst there’s a way to go, data within the NHS is certainly on the right track, particularly with Integrated Care Systems shared care records on the immediate horizon.

The Role of Data in Combating COVID 19

The early stages of the pandemic saw a 70% drop in general practice cancer referrals, and a 40% drop in attendance for both chemotherapy and radiotherapy. Anecdotally this had already been noted, but the team at DATA-CAN were able to use their existing infrastructure and expertise to rapidly analyse the most recent data sets, and bring these to the attention of the Chief Medical Officers of the four nations, the National Clinical Director, and NHSE.

Using Data-CAN’s research ensured that when cancer services were restarted in Summer 2020, they were ring fenced to ensure the drop in both referrals and attendance would not happen again.

Data Saves Lives Policy

Prior to NHSX’s Data Saves Lives policy – setting out the Secretary of State’s vision for how data will be used to improve the health and care of the population in a safe, trusted and transparent way – the NHS had never had a national data strategy, and it’s a document Jones is proud to have been involved with.

Setting out not only the journey, but also architectural principles, data standards and how they work together is just as important is the stories it tells. Interspersed with vignettes of real life stories to show the impact of effective data usage elevates it from a run-of-the-mill policy document into something more tangible and human.

Centering Health Information around the Citizen

In the week it was announced that the NHS App would feature patient record notes, centering health information around patients has never been more prevalent. Due in part to standalone systems existing in silo, there’s a huge amount of duplication in the system.

Whilst it takes a lot of thought and bravery to make the step change to a data centred approach, once patients and clinicians are bought in, they can have what Jones calls the ‘lightbulb moment’, as data driven care allows the system to put the patient at the centre and ensure data is not lost between services.

Wrestling Rotherham’s Fax Machines

So what is the best way to combat these siloed legacy systems and implement a nationalized data strategy?  The simple answer is: pay for it. Jones argues that the reason people still use fax is there isn’t a viable alternative. There’s a regional and national campaign called Axe the Fax and in her time as CIO of Rotherham Foundation Trust, she went out on the wards to try and find, and wrestle, fax machines from them. She acknowledges that whilst legacy technology is a comfort blanket, replacing it needs financial support.

Events like the Wannacry ransomware attack of 2017 brought home, particularly to Chief Executives and trust boards, that if software isn’t updated and firewalls and versioning kept up to date, you’re running  a huge risk. Investing in IT is no longer a nice-to-have, it’s mission critical.

Anonymity and Trust – a Balancing Act

Existing NHS risk stratification is crude. Primary Care identifies the top 2-5% of the highest risks of having a hospital admission, proactively manages them with their long term conditions – cardiovascular, diabetes, depression, hypertension – and that’s it. With a wealth of health data and the analytics to combine them, risk stratification across populations can, and will, become a lot more sophisticated. Better data usage in care records will allow the NHS to be smarter around care – representing a real step forward.

With any sharing of data the key issue is trust. Jones says that Trusted Research Environments, using public cloud, have increased confidence, with all the appropriate cyber security in place, but that this trust can never be taken for granted. Only 2% of patients currently opt out of their anonymized data being used, and the lower this figure stays, the more accurately the NHS can deploy advanced predictive analytics, machine learning, and AI to start to understand healthcare patterns. This can then be put back to the clinical front line in order to be able to identify cohorts of patients who would be better treated in a different way.

The Next Ten Years

Reports in national publications reveal that COVID has sped up digital transformation – previously hampered by people and culture barriers, rather than tech – by around 5 years. For Jones, over the next ten years we should see the emergence of a number of  key themes:

Firstly, we should see the end of paper in our trusts, and the removal of the trolleys of beige folders. Paperless has been the standard in many industries for years, and it’s now time for the NHS to catch up. Aside from this, taking the inefficiencies out of a system laden with duplication, and focussing on a real, data driven approach will be the key driving theme of the next decade. Most important is ensuring that lessons learnt from the pandemic are just that, learnt. Too often, Jones notes, lessons learnt are just lessons listed. With half a decade of improvement in 18 months, ensuring the same mistakes aren’t made next time around is paramount.


To learn more about how the NHS is using data to drive decisions and bring health records together, listen to the full podcast episode.

Guest: Monica Jones | LinkedIn



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