Why we need a NASH Data Commons

The Problem.  NASH stands for non-alcoholic steatohepatitis. It’s the worst form of non-alcoholic fatty liver disease (NAFLD). It’s where abnormal fat builds up in the liver. Over time NASH can lead to too much scarring in the liver (fibrosis). This is the body’s natural response to injury but it can lead to liver cirrhosis, liver cancer and premature death.

NAFLD is a silent epidemic. At the moment, we just don’t have any approved medical treatments – but we’re working on a project which we hope will change this.

Remarkably, best estimates say that 25% of the world’s population has NAFLD. It’s strongly linked to obesity and type-2 diabetes. Chronic liver disease (increasingly due to NAFLD) is now the 3rd most common cause of premature death in the UK. By 2020 we expect that NASH will be the main reason for liver transplants.

Spotting the signs of the disease early and having effective treatment is urgently needed to cut deaths. This disease has an economic burden too – in Germany, France, Italy, and the UK combined, there are around 52 million people with NAFLD, costing €35 billion every year.

So, what can be done?  I’m the Chief Investigator of a team, managed by the Stratified Medicine Scotland Innovation Centre and led by industry partners Eagle Genomics. We’re developing a ground-breaking project to develop new tests and treatments for people with NASH. The project also has the Universities of Edinburgh and Glasgow and NHS Scotland as partners. The team recently got a £1.7 million research grant from Innovate UK (the UK’s innovation agency) to develop a Data Commons for NASH – a world first.

A Data Commons brings together data, storage and computing systems. It’s a widely used tool for analysing and sharing data to create a resource for a wide range of users including the research community and  clinicians – and potentially patients and charities too. As more health data is added, our NASH Data Commons will evolve into a smarter, more comprehensive knowledge system that will be used to make new discoveries to understand and treat this disease better. It will help us to develop and validate new tests for NASH, and to identify patients who will get the most benefit from new therapies. We’re calling it SteatoSITE.

Where do you fit in?  This exciting project (and future research following on from it) will benefit hugely from members of the public getting their say. The NHS and Government want to prioritise this type of digital health and ways of analysing it (for example, using artificial intelligence), but there are ethical, legal, and social implications about accessing, storing and using people’s health data. We want to get people’s views on the way we’ll use health data and our methods of keeping it secure. We also want help to find the best ways to publicise our research and to make sure that users with varying levels of expertise can all make best use of SteatoSITE.

We want to get a small (3-5 people) non-expert focus group together face-to-face to talk about the broad aspects of the project (for about 2 hours). Then we plan to get the group back together after 1 year and also at the end of the 2-year project to discuss progress, issues arising, and next steps. Interested? We’ll give you back any reasonable travel expenses and you’ll also get a £20 Amazon voucher to say thank you.

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