4 2 / 2021 // LEOPOLDINA / NEWS
“ It ’ s time for a turnaround in how we control access to health data ”
Leopoldina member Roland Eils on a statement by the national science academies for the G7 Summit
Initial steps have been taken towards creating international standards and terminology for health data . According to the statement published by the national science academies for the G7 Summit , standards for sharing data in a trustworthy manner are also needed .
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The G7 governments are meeting for their next summit in Carbis Bay / UK from 11 to 13 June . In the run-up to the event , the science academies of the G7 countries have published the statement “ Data for international health emergencies : governance , operations and skills ”. Bioinformatics and medical informatics specialist Roland Eils ML was one of the scientists involved . In this interview , he explains the importance of establishing a reliable system for sharing health data globally .
Data is the gold of the 21st century . Why does the healthcare industry need a system for sharing data internationally ? Roland Eils : The ongoing COVID-19 pandemic is a clear example of how important it is to collect and share health data both nationally and internationally . When introducing measures to fight the pandemic , many governments have been partially flying blind because data , such as information on the risk of infection from children or the emergence of clusters of infection , was either unavailable or was made available too late for sound decisions to be made . Had data relevant to pandemic preparedness and response been collected nationally and brought together internationally , decision-makers would have been able to control the pandemic more efficiently . It would also have been possible to provide better explanations of the measures needed .
The science academies of the G7 countries have been advocates of data sharing for many years . Why is it proving difficult to turn this vision into reality ? Eils : One problem is that , wherever possible , health data needs to be collected and stored in a way which is standardised in accordance with international criteria . Otherwise , every country , state or even every hospital could potentially treat data differently , which would prevent it from being compared . Having said that , we ’ re making good progress to overcome this and an increasing number of internationally accepted standards are being introduced . For example , we now have standards for describing disease types , collecting lab data or gathering genetic information .
So what is the root of the problem ? Eils : The greatest challenges are on the legal and regulatory front . It is essential to clarify who is making the health data available , who is authorised to process the data and which legal requirements must be observed to share the data internationally . Health data is primarily personal data of a very sensitive nature . This means that matters relating to data security , data protection and data sharing play a particularly important role when making health data available in a health data space . We need such action to be widely accepted by the population .