Every time patients interact with the healthcare system, whether seeing their GP or going to hospital, data is created. This data is potentially hugely valuable for understanding population health and the effects of medicines and medical devices.
Unfortunately, this data is often fragmented with different organisations responsible for collecting data for different patient groups or in different parts of the healthcare system. These datasets can all look very different, for example, they might use different approaches to define, say, a heart attack, and can be difficult to access. This can prevent us from better understanding how well treatments are working and make it more difficult to make best use of NHS resources. This is especially a problem in rare diseases, where there are fewer people with a condition meaning we often need to combine multiple datasets to get robust evidence.
Fortunately, there are solutions. Fortunately, there are solutions. NICE is involved in the EHDEN project, which is converting dozens of UK and European databases to a common data model. This means that all datasets are made to look the same. Imagine that when you travelled abroad, you didn’t have to search for your US or European plug adaptor, because every country used the same system. That’s what common data models do, but for healthcare data.
This approach has already proved extremely valuable to healthcare regulators. In the United States it is routinely used to assess the safety of medicines. The European regulators are now using it to evaluate the safety and effects of treatments for COVID-19.
Common data models can significantly increase the speed with which evidence can be generated without compromising rigour and while enhancing transparency. This could help us ensure patients get faster access to innovative treatments in areas of unmet need. NICE will continue to work within the EHDEN project post Brexit to help realise these potential benefits for patients in the UK and elsewhere.
- Read more about our work in our newly released paper in Pharmaceconomics
- Find out more about the EHDEN project
Seamus Kent is senior adviser in Data and Analytics at NICE. Pall Jonsson is associate director of Science Policy and Research at NICE.
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