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

What it is

The vision of this multi-stakeholder community is for health, care and illness prevention information to be made more widely used for purposes of analysis, with appropriate data protection safeguards.

The ultimate aims are to improve the quality of healthcare systems around Europe, help public health services to better target the most important societal needs in the most effective ways, and accelerate research.

Vast quantities of health and care data are collected in hospitals and general practices, increasingly in a digital format rather than on paper. Patients, and healthy individuals, are collecting more data themselves too, about their health, illnesses, and ways in which they prevent illness.

However, there are many barriers to scaling up the collective ability to use health data better:

  • Data protection: How can privacy be assured when data are accessed by a wider network of persons than those providing care to each patient.
  • Lack of connectivity: For example, between electronic health record systems, and the many different formats in which data are held and may be shared.
  • Data on a large scale is needed: Larger volumes of data can help to discover the most successful treatments for a condition or for exceptional groups of patients.
  • Poor data quality: This can impede good data research on health data.

These barriers limit the scale at which health data can be combined, analysed and new insights obtained. So, today, very little of this data is actually used for the improvement of systems and services, health system learning, or research.

Recent progress

During 2019 the community collected example use cases illustrating the reuse of health data for research and public health.

Community team members reviewed the approaches taken, experiences gained and challenges faced by several large-scale initiatives that are creating data networks within countries or at a European scale. These networks are connecting many different real world data providers, such as disease registries and sources of electronic health records, in secure ways. They enable researchers to analyse this vast collection of patient health histories to make new discoveries about the best ways to care for patients and develop new diagnostic tools and treatments.

It is apparent that there are some common challenges that many of these networks face, which the community has analysed. An expert group has collected good practices that address some of these challenges and have identified the most important and highest priority challenges that still need to be addressed. A project report has been produced and a white paper will be published in spring 2020.

What is next

Tackling these highest priority challenges will enable Europe 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. During 2020 the community will pay particular attention to the opportunities from the proposed common European Data Space for health, the potential early users of it and how it should be designed to maximise public and stakeholder acceptance.

The community will identify what actions are most urgently needed, by which kind of stakeholders, in order to reduce the barriers and enable this data space to deliver benefits across all Member State health systems, the research and innovation communities  and the health sector industry.

In parallel, the community is looking in-depth at two major sets of challenges faced:

  • by research communities working with genetic information to combine that data with clinical information, so as to enable more personalised care delivery.
  • in developing and trusting artificial intelligence.

 

The community will:

  • Develop a series of policy recommendations, along with other parts of the project.
  • Help to ensure that in the future health data are used to:
    • Empower patients,
    • Strengthen patients’ relationship with health and care professionals,
    • Accelerate high-quality research.