New project: international transfer of health data for research

ALLEA is pleased to announce a new project on international transfer of health data for research. The initiative is the first tripartite collaboration between ALLEA, EASAC, and FEAM and will examine various aspects of data sharing in health research with particular attention to the implications of the EU General Data Protection Regulation (GDPR).

Data sharing is an essential part of modern research. Within medical research, pooled data on individuals are often needed to ensure sufficiently large study numbers, and to replicate findings and identify complex pathways. The EU General Data Protection Regulation 2016/679 (GDPR) has harmonised legislation on the processing of personal data within the European Economic Area (EAA, which comprises EU member states plus Iceland, Liechtenstein, and Norway). However, substantial challenges remain for data sharing outside of the EEA. In particular, there is a lack of non-consent based transfer mechanisms that can be used for sharing personal data with public institutions in other countries such as the USA. 

This project aims to: 

  • illustrate the value of multinational medical research
  • compare the potential of different solutions for ensuring sufficient transfer of health data outside of the EEA; 
  • inform the European Institutions in the forthcoming evaluation of the GDPR, especially with regard to the transfer of personal data outside of the EEA (chapter V) so as to improve procedures for international transfer of high quality, personal research data, safely and effectively. 
  • The project will exemplify how data sharing adds value to EU research and its translation to policy, innovation and practice, and it will clarify principles and options for reform taking into consideration the legal, ethical, and in particular privacy implications. 

 Joint project

This project is the first tripartite collaboration between ALLEAEASACand FEAM and will benefit from the complementary expertise joined in these networks. ALLEA has significant interest in sharing and using data (e.g. “Flourishing in a data-enabled society” and  “Sustainable and FAIR data sharing in the Humanities”) and will ensure that the project takes a broad and interdisciplinary perspective. EASAC has a history of interest in optimising the use of health research data, and worked together with FEAM in providing evidence on the value of research and the need for collaborative activity, in previous discussions with the European Commission and Parliament (e.g. ‘’Protecting health and scientific research in the Data Protection Regulation’’). FEAM has collaborated with numerous health stakeholders to issue recommendations in view of the discussions preceding the GDPR (e.g. “Ensuring a healthy future for scientific research through the Data Protection Regulation”).  

Migrants need better access to healthcare, European Academies say

EU and national authorities need to act now to support the health of migrants, according to European academy networks ALLEA and FEAM.

In a joint statement published today, European academy networks ALLEA and FEAM call on EU and national authorities to undertake crucial actions to support the health of migrants. This situation has become more critical as the lack of basic services and overcrowded conditions in refugee camps start to sound alarms all over Europe, especially during the coronavirus crisis.

The statement reviewed evidence showing that, in contrast to previous concerns, the transmission of communicable diseases from migrants does not appear to be a substantial problem. However, evidence also shows that migrants and other vulnerable populations are at high risk for several non-communicable and communicable diseases, including COVID-19.

“During this terrible crisis the issue of migrant health has been almost completely forgotten in Europe,” says Professor Luciano Saso, Vice-Rector for European University Networks of Sapienza University of Rome. “Forcibly displaced migrants are still struggling to reach Europe, exposing themselves to COVID-19. The incipient economic crisis threatens to further reduce the resources allocated by the EU to face migrant health issues.”

Academies recommend wider and easier access to healthcare services for forced migrants, and at least basic and emergency healthcare for irregular or undocumented migrants. Early access to healthcare may also lead to cost-savings for host countries.

According to Professor Alfred Spira, a member of the French Academy of Medicine,

All international and European legal instruments recognise the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, and all EU Member States should act to allow access to these basic human rights for everyone, including migrants and refugees.”

The coronavirus crisis has provided a global opportunity to enhance the integration of migrants while addressing shortages of healthcare workers. The recommendations within this statement, though drafted before the COVID-19 outbreak began, have acquired new relevance as several countries such as Germany, the UK, the US and Australia are incorporating refugees with foreign qualifications to address shortages in their health workforce.

The document concludes that reliable, validated and comparable data across countries and regions is the key element that will inform policies and confront myths around migration and health. Academies offer their support to lead the dialogue and scientific work to guide policies in this complex area.

This statement has been published at a time when developing evidence-based policies is particularly important. These recommendations, if transformed into policy, will enhance the protection of migrant health and of public health overall.

The recommendations from the academies include:

  • More scientifically validated data and frequent updates on migrant health should be produced and reflected in evidenced-based policies.
  • Increased cross-sectorial collaboration is needed to address current challenges in migrant health, also with a view towards tackling shortages of healthcare workers.
  • The health sector should be actively involved in policy discussions and actions on migration.
  • National health systems should allow for personal health information to be easily transportable and accessible while ensuring the protection of personal data.

The statement and the full set of recommendations is available in the publications section.  

This statement came about as the result of a joint ALLEA-FEAM conference on Migration, Health and Medicine held on 22 November 2019 in Brussels. Attended by stakeholders from research, policy and the civil society, this event strove to approach the topic of migrant health from a multidisciplinary, cross-sectoral point of view and in a coordinated fashion transcending national boundaries. This places the Academies of Sciences and Medicine in a critical position as they offer impartial scientific advice to policymakers for taking informed decisions.

Academic community calls for multidisciplinary approach to reduce health inequalities

Inequalities in health may have different causes, yet the most persistent and man-made are linked to the social factor. Socio-economic position, education or access to healthcare are likely to have considerable impact on our physical and mental wellbeing, as they do on the susceptibility to diseases. So what can societies and especially lawmakers do to reduce the inequalities caused by these factors?

Around 200 researchers, civil society representatives, and members of the public discussed these and further questions at the “Social Inequalities in Health Symposium“. The event was organised by Académie nationale de médecine in partnership with ALLEA and FEAM, the Federation of European Academies of Medecine, and took place on 22 January 2020 in Paris.

Sadly, health inequalities in all European countries are increasing even though we know many of the causes. It was stressed at the symposium that with so much evidence at our disposal we need to act decisively and bring stakeholders from research, civil society, policy and the wider society together to develop policies concerning inequalities.‘, says Professor Graham Caie, Vice President of ALLEA, who chaired the session on health systems, education and mental health. ‘Medical, social and educational factors of health inequalities are closely interlineked and require a multidisciplinary approach. Our networks of academies can assist with finding the best experts to investigate this vitally important topic.’

The recent symposium in Paris followed a successful joint conference of ALLEA and FEAM in November 2019 in Brussels. This event looked further into exploring how vulnerable groups such as migrants often find themselves challenged for various reasons, from language barriers to adaptability of healthcare systems in receiving countries.

The following day, invited experts from across Europe and North America attended a workshop focusing on key methodologies of health inequalities research. This meeting emerged from a joint ALLEA-FEAM-KNAW (the Royal Netherlands Academy of Arts and Sciences) project that seeks to synthesise the evidence-base and identify consensus among the various disciplines involved in the subject of health inequalities. A subsequent expert workshop will address causalities and socioeconomic inequalities in health will take place on 18 March in Berlin.

Conference report ‘Migration, Health and Medicine’ released

The ALLEA-FEAM report of the conference ‘Migration, Health and Medicine’ is now available. The publication summarises the discussions of the event held in Brussels on 22 November 2019. It provides the basis for a scientifically sound analysis on migrant health and, among other topics, addresses the methods and strategies to collect valid and comparable data on this issue.

The conference was organised by ALLEA and the Federation of European Academies of Medicine (FEAM), and hosted by the Royal Academies of Medicine of Belgium (ARMB and KAGB) in collaboration with the French Academy of Medicine (ANM).

Migrant health from a scientific perspective

Migrant health is determined by multiple factors, from socio-economic aspects of health to biological and environmental interactions influencing the health of migrant populations. However, the generalisation of research findings from one community or from one country to the regional or global levels faces considerable hurdles.

From the policy side in Europe, the complexity increases due to the various levels of governance at the EU. Whereas many aspects of migration and health can be dealt with an EU approach, the provision of healthcare services is managed by Member States.

The report seeks to inform policy debates on this pressing issue from a scientific perspective. It also underlines the need for academia, policymakers, civil society and international organisations to join forces to provide scientifically validated data on the health of refugees and migrants across Europe and the world.