Allowing health data to flow more freely between countries in Europe could help in the fight against coronavirus and at the same time help the region to be better prepared for future pandemics, but privacy and technical considerations need to be further addressed. sooner rather than later, experts say.
In the midst of a global pandemic, information sharing may seem like a mundane and unimportant part of the response to the health crisis. But the willingness of national health agencies and researchers to exchange data across international borders is a crucial element in the fight against COVID-19.
The Sars-CoV-2 virus was completely new to humanity when it broke into the world in December last year, meaning that scientists knew very little about how it spreads, the disease it causes, and, most importantly, how to treat it. .
But digital technology, combined with a willingness to cut through the international bureaucracy that normally restricts data sharing between countries, has enabled discoveries about the virus to be rapidly shared around the world.
Data sharing has allowed scientists to swap genetic sequences of the virus to track how it has spread, allowed doctors to quickly learn how to spot symptoms of the disease, and given hospitals the ability to share the best ways to treat. the virus. Pharmaceutical companies and researchers have also been able to use information about the virus and patients’ immune responses to rapidly develop potential vaccines and drug treatments.
“With the COVID-19 pandemic we have seen the success that information sharing can have by enabling collaboration across international borders,” said Dr. Niklas Blomberg, director of Elixir, an intergovernmental organization that coordinates the sharing. of data and knowledge in life sciences across Europe.
Relations
Dr. Blomberg says that relationships established as part of existing European research projects have allowed some organizations to quickly adapt to sharing information on the coronavirus. However, he and other experts believe that increased sharing of health data between countries and organizations will be essential in the current fight against COVID-19, as well as helping to detect possible future pandemics earlier.
Formal and structured ways of sharing data could help make better use of the enormous wealth of health data collected across the EU to tackle other existing public health problems , adds Professor Milan Petković, head of science for the data at the electronics company Philips and vice president of the non-profit Big Data Value Association.
“The creation of a common European health data space , in which health information is exchanged across borders and allowing the participation of a dynamic ecosystem of stakeholders, should be a priority,” says Professor Petković, who also researches health data science at Eindhoven University of Technology in the Netherlands.
“This pandemic has taught us some important lessons. First, about the importance and value of sharing data, and second, that we still need to take more steps to improve.”
Sensible
Sharing the kind of data that has been so important in the response to COVID-19 is not as simple as putting it in an email and hitting send. Many health data contains personal and sensitive details about patients. Other important information is tied to a bureaucracy that makes it difficult to share, while much data is collected by local hospitals or health authorities, but is never shared further.
“We need to unleash the value of data held by public sector bodies,” said Professor Petković, who pointed to the national COVID-19 patient data exchange portal in the Netherlands, set up by the Ministry, as a good example. Health Ministry of the Netherlands in collaboration with Philips.
Elixir and other pan-European projects aimed at establishing data exchange networks across Europe could also serve as an example of how to overcome some of these barriers.
“We have been building this infrastructure primarily for the exchange of genomic sequencing data ,” Dr. Blomberg said. “There are nodes in each country that are in charge of the national coordination of life science research data and in particular of genomic sequencing data. So Elixir runs the services that allow member countries to connect and exchange that data. “
Standardization
Part of that work has been to develop standards for how genomic data should be collected, compiled and shared . Much like the standardization of mobile communication networks that allow mobile phones to function anywhere in the world, scientific and health data must also be shared in formats that can be used wherever they are needed.
Projects such as the “1+ Million Genomes” initiative, in which ELIXIR participates in standard setting, are working on agreements that will allow large amounts of genetic and health data to be shared across the borders of European countries.
“When the COVID-19 pandemic struck, we were able to use the foundation that ELIXIR had put in place to sequence the genomes of both the virus and the patients,” said Dr. Blomberg. “It has been helpful in helping to see how the virus is mutating and what determines why some people get sick and others don’t get as sick.
In April, the European Commission established a COVID-19 Data Platform to enable research data to be rapidly collected and widely shared, as part of its ERAvsCorona Action Plan, and they have produced a manifesto to make the results accessible. of the COVID-19 investigation.
Many other pan-European projects also revolved around finding ways to cope with the pandemic, and countries with strong national infrastructures to coordinate data collection were quick to respond. Dr Blomberg notes that Spain, Germany, the United Kingdom, Sweden and other Nordic countries have strong national coordination structures that enabled them to quickly share data on the virus. “Countries that weren’t already connected in established projects require a lot more effort when it comes to sharing data,” said Dr. Blomberg. “And we will face the same challenge in future disease outbreaks . We have to move from sharing data, something which is done in rapid response by the main laboratories and institutions, to be available to all research bases in Europe “.
For that to happen, Blomberg believes that data sharing must be built into the structure of all European research projects so that information is collected, stored and shared in standard ways that allow it to be shared openly.
Privacy
It should also be easier for individuals to let the data they generate be used for the public good, added Professor Petković. “For example, an EU-level system could be developed that allows citizens or patients to make their health data available, if they so wish, for research, without reference to a particular research project,” he said. But this also has to happen in a way that can guarantee the privacy of patients whose data could be collected, and that citizens can trust.
“For healthcare systems and the healthcare industry to face a huge block of data, we have to think about privacy by design and security by design,” said Anett Mádi-Nátor, cyber defense expert at the Hungarian consultancy Cyber Services and member of the strategic committee of the European Cyber Security Organization (ECSO).
” Currently, most national health systems are at zero point and patients do not have much control over their own data . We need to take steps to ensure that individuals’ health data is protected in a much more secure way. ”.
Some of this can be addressed by projects like MyHealthMyData and SHiELD, which are trying to develop ways for sensitive health data to be shared in a more secure way. Mádi-Nátor also believes that artificial intelligence could help label health care that contains personal information. “You can flag personal and sensitive data to be handled with special care and provide further technical support from a cybersecurity perspective,” he said. “Once these kinds of services are up and running, we can start to discuss with the European public to create the trust necessary for health data to be managed in a much smarter and more useful way.”
An important step in this journey was the creation of the rules of the General Data Protection Regulation of Europe (GDPR) , but the computer systems and databases used by most health services still have to be updated to guarantee that safety is at the core of its design.
“Most of the state and managed systems are legacy systems that do not have built-in security,” added Mádi-Nátor. “Replacing them is not going to happen overnight, it will be a very long process that could take 10-15 years, as they become more secure step by step.”
With global pandemics expected to become more common in the future, global sharing of health data could help the world respond better. It could also help address other health problems such as cancers and rare diseases by allowing more information to be shared between countries.
“COVID-19 has been a really important driver for European data spaces,” said Dr. Blomberg. “But it could be used for other aspects of the health program. This is a really important opportunity. “
Artículo original
This article was originally published in Horizon, the EU Research and Innovation Magazine
