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The national medical way forward

Eline N. Lincklaen Arriens

Views, thoughts, and opinions expressed in the text belong solely to the author, and do not represent the views of the Support Centre for Data Sharing or the European Commission.

Before I deep-dive into two examples of countries that are sharing health-related data during the COVID-19 medical alert, let’s back-track a bit and discuss the spread of the virus.

Curbing the spread

COVID-19 has been widely discussed during the last few months. On the Support Centre for Data Sharing (SCDS) website, I’ve already contributed two pieces discussing its spread and impact on society:

  1. Let’s be real, we’re not going back to normal, where I discuss the impact COVID-19 has had on society (and on data sharing) and how our sense and experience of normalcy will never be the same in a post-COVID-19 world.  
  2. Unmasking society’s supply shortcoming, where I focus on how the COVID-19 pandemic has highlighted society’s failure to meet demand and how data sharing can (and could have) support medical facilities in times of a crisis.

A common call to action throughout the pandemic is that COVID-19 should be contained and that we need to “flatten the curve”. The most common measure that was implemented by countries across the world to achieve that is social distancing.1 To complement this measure and to support the healthcare industry, entities such as businesses, universities and government bodies have begun to deep-dive into research on COVID-19 and on different data sharing models.  

For the national health

Information is vital for society’s response to a health care emergency. To protect those working in the health care industry, and by extension all of us, we need to monitor and respond to COVID-19 as effectively as possible. To achieve this, data is key.     

Across Europe, governments have been monitoring, researching and debating how best to address COVID-19. Datasets supporting these activities can range from the population of a region, the number of tested COVID-19 patients in a city, a hospital’s inventory of protective gear (think face masks and surgical gloves), and supermarket visits in a specific neighbourhood. This data can help track the spread and transmission of the virus, plan how best to manage their resources, and save lives.  

United Kingdom

In the United Kingdom, the National Health Service (NHS) is an unrivalled source of health data. It is the universal health care system that covers almost every person in the country. Thus, the NHS has the potential to have consistent, coherent information about patients and the effectiveness of their treatment. Following the outbreak of COVID-19 in the country, there has been rapid action to address the situation. Examples are:

  • The NHS Digital – a service that provides users with information to quickly help identify the most at-risk citizens ; and
  • NHSX – a service that provides guidance to clinicians on appropriate ways to communicate, share information, and deliver care to patients.  

In addition to work being done by the NHS, the Department of Health and Social Care is calling for organisations – including health care services, GPs and local authorities – to share data to support efforts against COVID-19.2

The Netherlands

There are several initiatives of institutions sharing health data in the Netherlands. In Unmasking society’s supply shortcoming, I already discussed how hospitals in the Netherlands share data on bed availabilities to ensure that patients are directed and admitted to hospitals where they can be treated and monitored. Following the spread of COVID-19, more initiatives have emerged.  

A recent data sharing initiative is Health-RI – a public-private partnership of more than 70 organisations involved in health research and care. This national initiative aims to facilitate and stimulate an integrated health data infrastructure that is accessible to researchers, private citizens, and health care providers across the country. Within this initiative, there are programmes to curb the spread of the pandemic. One example is the launch of the Dutch COVID-19 Data Support Programme. The programme supports investigators and health care professionals with tools and services in their search for ways to overcome COVID-19 and its ramifications to society’s health.

As can be seen in the examples, due to the COVID-19 pandemic data sharing must be done differently to support the fight and to protect citizens. Now, information needs to be shared quickly and be widely accessible to organisations so that it can be collected, analysed, and used. The UK are using the NHS’s database to create services that help safeguard medical workers and the country’s citizens health. Private and public entities in the Netherlands are continuing (or starting) to share data amongst themselves to curb the spread and support research and action. These are only two examples from a national level in Europe. There are several from other European countries such as Italy (e.g. Italy’s Civil Protection Department’s dashboard on COVID-19). Moreover, and at a higher level, the European Commission has launched the European Data Portal’s section dedicated to COVID-19, offering datasets, data-related initiatives and data stories related to COVID-19, and also funding through the Horizon 2020 programme the “European COVID-19 Data Platform to enable the rapid collection and sharing of available COVID-19 medical data. Stepping away from Europe, there are also global initiatives, such as the WHO’s Solidarity Trial, and national initiatives in Asia and the United States. These will be touched upon in later opinion pieces.

As the curve flattens in most countries across Europe and national governments are thinking of what to do next, these initiatives will continue to grow and investigate how to prevent a second wave of the pandemic. This opens a different conversation (that’s already begun) on privacy and the question of how my data is being used and do I have a say. With data sharing activities escalating to ensure the health of citizens (and economies) across the world, so too will conversations about privacy implications. For more details on this, explore the SCDS’s newsroom for articles written about privacy and security around data sharing, and stay tuned.

Know of any other data sharing initiatives in Europe (and beyond) that link to COVID-19? Share them with us or chat with us about it on the SCDS forum!