All matters data and all data matters

This is often how I describe my role and it tends to resonate well. It has been a busy Autumn conference season and I have been in demand as a speaker at a variety of events. By moving online to virtual events I have been able to engage with more than I would have done in previous years.

One of those events was the SNOMED International Expo 2020 held in October. Originally it was to be in Lisbon, Portugal which I was really looking forward to. Hopefully we will manage it next year.

As a global community, those of us who have a passion for open standards and clinical terminologies in particular, our main annual event is something very special to us. The International Health Terminology and Standards Development Organisation (IHTSDO) was formed in 2007 with nine member states at that time, now there are over 50 participating countries. A great testament to the hard work and determination of colleagues. So what is the relevance to Health Data Research UK and DATA-CAN in particular?

My presentation for Expo 2020 was titled ‘Sailing the high seas in a data ark’ – the use of open standards to tackle the population health management challenge. In the oceans of data out there it is important to steer a clear direction of travel. I described the learning objectives to the 320 attendees at my session:

• Help organisations to combine data and determine the value it can provide to enable better data driven decisions
• Optimise pathways, processes, risk stratification, population segmentation, granular targeted intervention
• Use of SNOMED CT and Open Standards to achieve excellence.

The level of interaction was excellent and some of the comments I received included:

“This is so great to see the real time data and knowing that SNOMED CT is being used as the backbone terminology.”

“Fantastic presentation, thank you! What percentage of people opt out of secondary use of their data and how does this impact on interpretation of the data overall?”

It was the biggest Expo ever with almost 1,900 delegates registered and 1,195 unique live event attendees. As a truly global event with delegates from more than 60 countries, and no time-zone or financial barrier to delegate session attendance, it has 16,000 sessions views so far – both live and on-demand. The recording is available until 8 Jan 2021.

As I explained in my blog published earlier this year, I believe that “you can’t have quality without standards”. As an HDRUK Hub we have a responsibility for improving data quality. Our aim is to make health data more usable for research by:

• Extracting and bringing together data in secure research environments
• Increasing data completeness and quality
• Finding and supplying expert data scientists and services.

DATA-CAN is also supporting the use of real-time cancer data by working together with public organisations and industry to enable hospitals to share real-time data to identify patients for clinical trials, benchmark against other hospitals, understand variations in care and help researchers develop new products.

We are in the process of extending our work with real-time datasets from the NHS over the coming months to support the recovery of cancer services and understand the impact of COVID-19 on cancer patients. A key to success is being able to aggregate and compare healthcare data to get the bigger picture and have ‘actionable insight’. Diversity components to help to address health inequalities are also an important part of this because there is evidence of the disproportionate impact of COVID-19 on black, Asian and minority ethnic (BAME) communities. I look forward to providing further updates on our real-time data work as it progresses.

As I said at the beginning – all matters data and all data matters. This not only describes my role as Chief Data Officer at DATA-CAN, it also sums up DATA-CAN’s vision as we strive to unlock the power of health data to improve cancer care. 

Monica Jones is Chief Data Officer at DATA-CAN