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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 available for analysis. The ultimate aim is 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.

There are a number of challenges to be faced, however. These situations create expectations for the data to be analysed. But today, very little of this data is actually used for improvement of systems and services, health system learning, or research.

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.

Progress so far

In preparation for the launch of the collaboration platform, ten example descriptions were developed to illustrate why and how better use of health data could help tackle research and public health priorities. One example is the early detection of antibiotic resistance across Europe.

They were presented at the platform’s launch workshop in March 2019, in Lisbon, Portugal.

At the workshop, around 20 experts from patient, healthcare and research organisations examined and improved these examples. They helped to define the criteria that should be used to determine the social value each one can deliver. The platform members will next prioritise the examples based on these societal value criteria. The ones expected to deliver the greatest value will be expanded into full “use cases”.

The planning team has so far held a number of virtual meetings.

What is next

During the two years of this project we will:

  • Focus on ways in which information systems across health care services - within and between countries in Europe - can be better connected to enable large scale data analysis that will maximally protect patient privacy.
  • Work alongside patient groups to examine how patients can best be given more say in how their data are used.
  • Look in depth at personalised medicine and how, with genetic information, it is increasingly possible to determine which treatment choices will suit each patient best.
  • Build on the significant knowledge already accumulated about the ability to scale up data analysis for the diagnosis and treatment of rare diseases.
  • Emphasise stakeholder co-operation at scale.

The collaboration platform will:

  • Develop a series of policy recommendations, along with other parts of the project.
  • Write a White Paper on better utilisation of data infrastructures to support secondary uses of health data, by the end of the first year 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.