A European health data landscape for rare diseases

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The Covid-19 crisis has played a key role in underlying the crucial role played by health data in the organisation of healthcare by providing insight into the evolution of the pandemic, shared learnings, treatments and vaccines. The power of collaboration around data through initiatives such as track and chase apps, genome sequencing and the use epidemiological data have underpinned health policies. However, the health sector has yet to catch up with the data revolution as digitalisation efforts are a decade late compared to other sectors. Only a fraction of the health data produced by a large number of sources, ranging from clinical trials to surveys and wearables, is currently used.

Recognizing the crucial importance of health data, European Commission president Ursula von der Leyen has put forward a bold proposal for a European Health Data Space. Conceived as an interlinked system that offers access to portable, comparable and interoperable health data from across the EU, the European Health Data Space aims to promote the exchange of health data, boost research and ensure that citizens have control over their own data. The Data Governance Act, published by the Commission in November 2020 supports the implementation of the European Health data space, with a legislative proposal expected at the end of 2021.

Rare disease patients are the best rationale for the EU Health Data Space. The limited number of patients that suffer from one of the 5000 to 8000 known rare diseases and the scarcity of knowledge and expertise make rare diseases a field that greatly benefits from European action. Rare disease patients are especially willing to participate in such efforts as the EURORDIS Rare Barometer survey found that 95% of rare disease patients are ready to share their health data compared to 37% to 80% of the general population.

Without data sharing, these patients will continue to face long diagnostic journeys and limited treatment options. The European Reference Networks – virtual networks of experts across Europe that advise on the diagnosis and treatment of rare disease patients – have done a good job at establishing specific data registries. The next challenge is to federate them and ensure their interoperability so that data can flow between them.

Building on its work on rare diseases from the last decade, Friends of Europe is launching a multi-stakeholder working group to explore how the EU can meet the specific needs of the rare disease’s community, patients, researchers and clinicians included.

The working group will identify an EU response to the fragmentation of data across different rare disease registries and member States, work towards the effective use of data in the field of rare diseases and will offer recommendations for the EU mandate on how the learning on rare diseases may be a flagship for data sharing in health.


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Online roundtable - A European health data landscape for rare diseases Expand Online roundtable - A European health data landscape for rare diseases

The COVID-19 crisis has changed the health data landscape and underlined its crucial role in the organisation of healthcare, leading to renewed efforts to collect, codify and analyse data to inform policy. Building on these efforts, the incoming European Health Data space will support the exchange of health data, boost research and guarantee that citizens have control over their data. Published in February 2021, the Foresight Rare 2030 report recommends that within this framework, data from rare disease patients should receive special care given that it is sensitive, lacks standardisation and suffers from fragmentation across different registries that are not interoperable.

  • What are the steps to be taken to ensure that the European Data policy framework including the European Health Data Space will integrate the recommendations from the Foresight Rare 2030 study?
  • How can we ensure that the European data framework provides support for all rare disease stakeholders: the patient community, healthcare professionals, researchers, policymakers and regulators?
  • How can we build a rare disease data framework at the EU level which would provide a fast lane for sharing rare disease and support more interoperability? What would incentives for member states be to implement such a framework?

SPEAKERS

Yann Le Cam

Chief Executive Officer of the European Organisation for Rare Diseases (EURORDIS)

Ségolène Aymé

Vice chair of the Scientific Advisory Board of the Health Data Hub, France

Markus Kalliola

Coordinator of the EU’s Joint Action Towards the European Health Data Space at the Finnish National Fund for Research and Development (Sitra)

Ceri Thompson

Deputy Head of the eHealth, Well-Being and Ageing Unit at the European Commission Directorate-General for Communications Networks, Content and Technology (DG CNECT)

End of roundtable
Speakers

Speakers

Yann Le Cam
Yann Le Cam

Chief Executive Officer of the European Organisation for Rare Diseases (EURORDIS)

Show more information on Yann Le Cam

Yann Le Cam has dedicated close to 30 year to raising awareness of rare diseases as a public health priority in Europe and beyond. In addition to co-founding and leading Eurordis, which gathers today 751 rare disease patient organisations in 66 countries, he has held a number of high-ranking positions in leading medical research NGOs and patient organisations. He is also recognised for his particular contribution to the adoption of many European regulations that impact the lives of rare diseases patients. From 2016 – 2019, Yann Le Cam served as a member of the European Medicines Agency’s (EMA) Management Board.

Ségolène Aymé
Ségolène Aymé

Vice chair of the Scientific Advisory Board of the Health Data Hub, France

Show more information on Ségolène Aymé

Ségolène Aymé, a medical geneticist, currently emeritus director of research at the French Institute of Health and Medical Research (INSERM). She serves as Vice chair of the Scientific Advisory Board of the Health Data Hub in France, and as chair of the ethics committee of the Paris Brain Institute.

She is the creator of ORPHANET, the European database of rare diseases and orphan drugs. She has held numerous national and international positions in Human Genetics and Rare Diseases. In particular, she chaired the EU Committee of experts of rare diseases (EUCERD) and the WHO Topic Advisory Group for rare diseases.

Markus Kalliola
Markus Kalliola

Coordinator of the EU’s Joint Action Towards the European Health Data Space at the Finnish National Fund for Research and Development (Sitra)

Show more information on Markus Kalliola

Markus Kalliola works as a Project Director in Sitra’s Health data 2030 project and as a coordinator in the EU’s Joint Action Towards the European Health Data Space (TEHDAS) cooperation project. The Health data 2030 project creates solutions, draws up rules and builds a bridge for the cross-border use of health data in Europe.

Markus has been engaged in digitisation projects in the private and public sectors. With his experience as an entrepreneur and an EU official, he understands both practice and the directives.

Earlier Markus worked in Sitra’s Fair data economy project and was responsible for enhancing the secondary use of well-being data in Finland and creating the operating model for the new data provider Findata.

Ceri Thompson
Ceri Thompson

Deputy Head of the eHealth, Well-Being and Ageing Unit at the European Commission Directorate-General for Communications Networks, Content and Technology (DG CNECT)

Show more information on Ceri Thompson

Ceri Thompson works towards the digital transformation of health and care in her current role at DG CNECT. Having previously worked at Eurostat and the Directorate-General for Health and Food Safety (DG SANTE), she has extensive experience across a range of EU health policy areas, including nutrition and physical activity, alcohol and drugs, tobacco, pharmaceutical policy and health inequalities. Prior to joining the EU institutions, Thompson worked on global health policy at the UK Department for International Development and KPMG’s international healthcare practice, in addition to epidemiological research projects in the UK and Brazil.

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