The COVID pandemic has been a wake-up call for the need to share health data in a commonly usable format. The European health data space would stimulate health research and support the development of personalized medical treatments, said Padraic Ward.
Padraic Ward is the head of Pharma International Roche. Roche is one of largest biotechnology company and leader private investor in health research around the world. He spoke with Luca Bertuzzi, Euractiv’s digital editor,
The development of the European health data area is one of the priorities of the European Commission. What is the current state of affairs?
I am very optimistic about the discussions on how we are going to create a really strong base in Europe for health data. I am very encouraged by what we see coming from the European Commission. In particular, the move towards a European health data area is very important for several reasons.
First, it will have a positive impact on patient outcomes. An entire part of the Roche group is dedicated to ensuring that significantly large-scale databases are used to personalize treatments for patients. The more health data available for analysis in the EU, but also worldwide, the more precise the personalized treatments will be.
Second, health systems are becoming more sustainable. If you can make sure the right person is getting the right medical intervention at the right time, then you have better patient outcomes and value for money for the healthcare system. Many indirect costs associated with disease can thus be eliminated or reduced.
Thirdly, it is important for us, as a company and as an industry, to ensure that Europe is a significant player in the global research and development of medical solutions. It especially depends on how you can make health data interoperable and easily shared. The availability of data makes it possible to better understand the diseases and therefore to develop more personalized treatments. Thanks to them, we have already seen great advances in cancer and other areas in recent years.
When I started working in this industry about 25 years ago, Europe was an equal partner with the United States in healthcare innovation, but that is no longer the case. Things have changed a lot in the United States and China has also become an engine of innovation. What I see coming out of the European Commission over the past few months really gives me confidence that there is an opportunity for Europe to regain its place as a pillar of innovation and to take the lead in certain areas.
Health data is, of course, sensitive data. How to ensure that this data is shared in a manner compatible with the GDPR, the European framework for the protection of privacy?
Confidentiality and the processing of health data with an appropriate level of confidentiality is a key point here. The GDPR gives us a good basis for doing this. There is still work to be done to ensure that the GDPR is implemented and interpreted in the same way in all countries of the European Union. Still, it provides a really solid foundation. After that, the next things we need to put in place are an appropriate level of governance for the development of a common European health data space.
There is broad industry support for a single European body that would be responsible for setting the general framework and guidelines for data governance, with support from EU countries that would be responsible for ensuring that the implementation takes place in accordance with these general principles. Likewise the European Medicines Agency, which is the European agency responsible for evaluating medicines before they are made available to patients. The decisions of the EMA are then implemented by the local regulator in each country.
We know that there is a lot of untapped data in Europe, which is not shared, although we would have economies of scale. What is preventing this from happening?
There are three points here. First of all, it’s important to remember that this is all still relatively new. It is only in recent years that it has become evident that the ability to access meaningful data at scale would be useful in enabling better health care and better research and innovation. This was motivated by the development of information technology which allowed us to analyze data like we can do now.
Second, in Europe, as in most other countries in the world, medical information is still very well documented. Most interventions are recorded in individual documents, and specific data points are not recorded separately so as to facilitate their retrieval and combination with others later. It certainly slows down the ability to use specific data elements for research. To unleash the power of untapped data today, data must be recorded in a standardized way that makes it interoperable, less focused on a single document and more on specific elements of the intervention, such as patient characteristics, diagnosis , hospital admission or diagnostic test, and its associated result.
Last but not least, in Europe we also have the fact that health systems are managed on a national, sometimes even regional basis. So we don’t yet have the data flow that would provide the scale required for much of the work we do. There is still work to be done in this direction.
What do you think is the role of industry in the development of the European health data area?
From an industrial policy perspective, I think it’s really important that the private and public sectors work together. We have different roles, but it is by combining them in the right way that allows us to achieve the best results. In the private sector, we are investing more than ever in research and development. And we all want to make sure these investments go even further.
We aspire not only to improve results, but ideally even to cure diseases. We try to ensure that patients have access to the right care when it is needed, and that when it does, it is very effective. The only way to do this is for the entire health ecosystem to work together, to seek opportunities that can prevent disease, improve human health, and reduce inefficiencies.