How a single data strategy empowered Genomics England to sequence the future of British healthcare
It was called one of the greatest feats of exploration in history. From its beginnings in 1993 to its completion in 2000, the project to map the human genome aimed to empower humanity for the first time to read the blueprint for how human beings are built.
Since the genome was finally mapped, organisations around the world have started to use that capability to improve how they provide healthcare to their citizens.
Take patients with rare diseases or cancers. In the past, they would endure long journeys to diagnose what was wrong with them and what they could treat it with. The approach was primarily based on trial and error, and the journey would often be unsuccessful. The result was a system that cost a significant amount of time and money for health services and provided mixed results for increasingly frustrated patients.
By sequencing the genomes of patients with these conditions, as well as their families, we can move toward a greater understanding both of diagnosis and treatment for people all around the world.
The journey to 5 million genomes
As Matt Hancock MP, Secretary of State for Health and Social Care, noted, “The future of healthcare will be more personalised, more predictive, more preventative - using data to target those who need support to lead healthier lives.” The 100,000 Genomes Project, run by Genomics England and funded by the UK Department of Health and Social Care, is just one example of the truth of that statement.
Initially created to sequence 100,000 genomes to better understand rare diseases and cancers, the success of the project led to its expansion to sequence up to five million genomes in the next five years. That expansion will encompass all new-born babies as well as an ambitious goal to sequence all NHS patients. But that growth brings with it an enormous amount of data, especially when you consider each genome contains 3.2 billion letters of DNA and totals around 200 gigabytes. More than 200 petabytes of data will ultimately be processed and stored over the course of the project. To put that into perspective, if you printed that amount of data out you would fill approximately 4 billion filing cabinets – enough to circle the world almost four times if you placed them side-by-side.
Getting the right data strategy in place was essential to bring together fragmented data sets, ensure privacy and security for sensitive and confidential information, and to provide insights into cost-efficiencies to help as many people as possible.
Taking a step back: Creating a single data strategy
That’s when Genomics England turned to Telstra Purple, Telstra’s services business that links technology to purpose and people. Working in partnership with Genomics England, Telstra Purple took a broad, consultative approach to the problem.
After interviewing a wide range of stakeholders and ensuring all relevant challenges were accounted for, the team shaped a new approach based on creating a single data strategy. Amie Pitt, client director at Telstra Purple, noted, “By focusing on the wider organisation, we were able to identify application spend, down to the user level, giving insight into research group activities. “With the expansion of their scope, Genomics England needed to transform from a research organisation to a big data organisation,” said Amie. “They were understandably spending a lot of money on IT technology every month. Our work was to give them the visibility and access to the data to make those decisions quicker and more accurately.”
By taking a step back and creating a single data strategy with Genomics England, Telstra Purple could provide a single view across the organisation and link previously disparate data analytics projects. That empowered the team to share data across teams, predict costs for specific apps, calculate costs per genome, and even price per commercial offering. “That's where our value was. It means we can get more results cost effectively for the patients Genomics England are serving,” said Amie.
Lessons in objectivity
What we can learn from our work with Genomics England is the value of an objective, inclusive approach to create a single data strategy.
Acting in a consultative way across all stakeholder groups – from IT people to academic researchers and commercial groups – is critical. But that also means speaking at a level beyond technology, to understand diverse requirements and provide agnostic consultancy. That means listening closely to challenges from across the organisation. But it also means providing key teams with the right information to empower them to make better decisions, share insights broadly, and communicate successes easily. With a better ability to assess the cost of processing data, for example, Genomics England was able to engender a higher appreciation among its staff of its value.
The ultimate goal is to help more people by sequencing more genomes. By being able to take a step back and look objectively at the data journey, Genomics England is now able to do just that.