Better Data – DigitalHealthEurope

Better data to advance research, disease prevention and personalised health and care

What it is

The better data multi-stakeholder engagement mission is to identify what is needed and mobilise stakeholders to act in order to make health and care data, collected in hospitals, general practices and by patients themselves, more widely available for purposes of analysis and further research with appropriate data protection safeguards.

The ultimate aims are to improve the quality and resilience of healthcare systems around Europe, help public health services to focus more on prevention and deliver better, more efficient, cost-effective and accessible services and accelerate research.

In order to develop the best possible health data networks from which researchers and healthcare organisations can discover how to advance the quality and safety of care, the DHE multi-stakeholder engagements have identified the principal challenges and worked on recommendations on how to overcome them. These challenges were: data protection, data quality improvement, tackling data fragmentation through accelerated adoption of interoperability standards and the scalability challenges posed by personalised medicine.

Outputs

2020-2022 Roadmap of the 1+Million Genomes Initiative

The roadmap outlines the steps and conditions needed to reach the European target of at least 1 million sequenced genomes collected across Member States to advance the prevention, diagnosis and treatment of communicable, non-communicable and rare diseases.

DHE Consultation with citizens/patients on the European Health Data Space

The report collects the views of citizens and patients on the EHDS, their perception of the benefits of using health data on a European scale, and their considerations of important principles and values that should underpin the European Health Data Space.

Digital Health Standards

Digital Health Standards is a joint communication effort between the DigitalHealthEurope project, empirica and The European Institute for Innovation through Health Data to grow awareness about the importance of health ICT standards.

DigitalHealthEurope recommendations on the European Health Data Space

DigitalHealthEurope presents 32 actionable recommendations addressing three significant transition challenges for the EHDS: (1) From privacy protection to citizen protection. (2) From “citizen as data subject” to “citizen as key change agent in the health data ecosystem”. (3) From policy and regulatory frameworks to engagement, adoption and implementation.

European Health Data Space Industry Report

Industry’s vision for the future EHDS including the commitments they would be willing to make in order to support the implementation of high priority use cases such as accelerated drug and device development, AI and personalised medicine genomics.

White Paper: Better Utilisation of Data Infrastructures to Support Secondary Uses of Health Data

Consolidates knowledge and lessons learned from mapping the evolving European and national landscapes of health data sharing for care and for research. The White Paper has been followed by a series of stakeholder consultations about the European Health Data Space (EHDS): industry and citizens.