Sharing health data

Last time, I talked about how the current corona crisis has unfortunately impacted ECNP’s ability to organise physical meetings for the rest of 2020. On our corona watch page you will find some of the latest perspectives, insights and best practices on the coronavirus crisis from around the ECNP community.

We are also trying to be sensitive to the pressures we know the corona crisis has placed members of the ECNP community under. In response to the many requests we have received for exceptional late submission of abstracts, we have therefore opened a new call, which will allow you to submit a late abstract right up until until 7 July.

And we are working hard to make sure you have an outstanding ECNP Congress. Many of us have already been participating in virtual congresses and being together, but alone, in front of our computer screens has become a daily routine. Rest assured that we in ECNP is doing all we can to make the experience as close to the physical meeting as we can.

In the last few weeks most European countries have moved beyond the worst part of the corona emergency and many have re-opened their borders. In other parts of the world, however – for example, in South and North America – they are still in the earlier phases of the crisis. Within the last four months, much has been learned about how to handle such an epidemic. Physical distancing, particularly avoiding meeting with many different people, and improved hygiene have proven to be instrumental in combating covid-19. Aggressive testing programmes coupled with searching for contacts to affected individuals has become another strategy to limit the spread of the disease. In many places, you now need to verify that you have recently tested negative for covid-19 infection. Are there any additional steps that can be taken?

To avoid starting a second wave of covid-19 in the absence of an effective treatment or vaccine, one way forward is to collect information not only about citizens’ health, but also about their whereabouts. One key element of a health authority strategy is exactly to identify covid-19 affected individuals and track their contacts, via smart phone apps. Such sensitive data could in theory remain in people’s own phones, but the sense is that such a scenario is unlikely. Rather than opposing data-sharing, we need to debate how to secure democratic and personal rights in a world in which surveillance has become necessary. Instead of intimidating or suppressing citizens, we need to solve the challenges that pandemics – and other health-related problems – present. In Europe, according to the General Data Protection Regulation, known as the GDPR, this will require consent from all citizens. Voluntary, specific, informed and clear consent. But GDPR does not supersede essential health challenges, and protection of citizens’ health is indeed such a health issue.

Digital health has long been a major priority for ECNP, not the least because of its potential to accelerate progress within the research and treatment of brain disorders. It has also been the theme for the last two New Frontiers Meetings held in Nice, France. On 7-8 March 2021 ECNP will organise the third New Frontiers in Digital Health Meeting in Nice. This two-day meeting has become an essential platform for focused, high-level exchange at the intersection of research, science and new treatment development. The topics that are covered include digital therapeutics, how to gain regulatory approval for digital biomarkers or therapeutics and how one can optimise clinical trials with digital tools. Clinical neuropsychiatric research has long suffered from difficulties in sharing data in a safe manner and large-scale research is instrumental to make new discoveries and to replicate research finding. Hopes are high that some sustainable solutions for digital health, propelled by the current corona crisis, also will benefit the important research within our area.

Gitte Moos Knudsen
ECNP President