Building the European health data eco-system
It is sometimes said that data, including health data, is the “new oil” – in other words the fuel that will power the future digital economy. That is actually a rather misguided analogy.
Oil is an exhaustible resource – you can consume it only once by burning it, then it’s gone (and it damages the climate when you do). Health data is very different – once collected, for instance, a lab result that is entered into a patient record can be used an infinite number of times for a wide variety of purposes. Not only can it be used to guide the future care of that particular patient, but it can also: be employed to inform research and development of new, more effective treatments; be paired with genetic and environmental information to provide new knowledge about the origins of diseases; provide information about the effectiveness of healthcare services and compare different treatments or hospitals; and used to guide payment decisions and resource allocation in our healthcare systems.
However, these additional uses, which could provide immense value to patients and societies, hinge on the possibility to aggregate and analyse data collected from many patients and to connect data that has been collected for different purposes, using many different systems and technologies. When a GP enters data from a patient’s yearly health checkup into an Electronic Health Record, it’s not a given that this information will be available to another doctor if the patient ends up in an emergency care unit months later – or perhaps information that the patient recently has collected a prescription drug from the pharmacy. Moreover, heart rate data collected by a patient’s fitbit is certainly ending up in a completely different place.
Despite lofty ambitions from policymakers aimed at making our healthcare systems more digital, health data is still very much locked into silos, with only minimal communication between them. The barriers between the systems can be anything from legal requirements to organisational restrictions, technical hurdles, different standards for entering data, or simply a lack of political will to invest in the necessary infrastructure. What’s more, there are legitimate privacy concerns that need to be addressed – most patients are more than happy to share their data for the benefit of other and future patients, but want to know how their data will be used and that their privacy can be ensured.
But the societal benefits of creating a more connected and sustainable health data eco-system in Europe are too big an opportunity to be ignored, and all stakeholders must therefore work together to overcome the barriers and create the necessary rules and infrastructure to make this happen. That is why 11 EFPIA companies have joined forces to invest in a European Health Data Network through the Innovative Medicines Initiative, Europe’s biggest public-private partnership. By joining forces, the private and public sectors, working together in a collaborative framework, with the objective of creating a common standard for hundreds of health data silos all over Europe, will in the end boost research and healthcare service efficiency, while ensuring better care for millions of patients.
Instead of moving all the data to one place, the European Health Data Network will use a “federated model”, which means that all health data will stay within their respective systems (be that an Electronic Health Record or a patient registry) – but will be structured in the same way. This will allow a researcher to ask for the same analysis to be done in several “hubs” of the network simultaneously – for example an analysis of which medicines have been given to patients with a certain cancer, and what the outcome was of that treatment – and then collect the results. That way, researchers can aggregate data on a larger scale, with much less effort and without any actual patient data being moved.
Once implemented, these common standards will benefit anyone seeking to utilise health data for legitimate purposes – from academic researchers to hospitals, to public health authorities and the life science industry. It is the equivalent of building roads and bridges – a common goods infrastructure that benefits everyone, including public buses, transport companies and private motorists.
EFPIA believes that creating a vibrant and sustainable health data eco-system is a strategically important issue for Europe, which will not only bring better health for citizens and patients, but also provide fertile ground for innovation, enterprise, growth and jobs. That is why our companies are investing in a common health data infrastructure, because we won’t rest until we have created a European Digital Health Society for the benefit of patients, citizens and society.
To read more about the European Health Data Network project, and how data from the Innovative Medicines Initiative will be made Findable, Accessible, Interoperable and Re-usable, read topic 2 and 4 in the 12th call for proposals under IMI2, click here.
Links to information on how to apply for the different topics in the 12th call, including the European Health Data Network and the FAIRification of data can be found here.
To read more about the benefits of health data, click here.