Cooperating on Data: The Missing Element in Bringing Real Innovation to Europe's Healthcare Systems

Public Health Genomics. 2019;22(3-4):77-101. doi: 10.1159/000503296. Epub 2019 Oct 21.

Abstract

Europe's growing awareness of gaps in its healthcare provision is not being matched by an increase in remedial action - despite the rich transformative potential of new approaches to data. The new availability of data offers policymakers tools that would allow Europe's huge investments in health to be far better spent, by being properly targeted. The result would be far better health for far more Europeans. But that requires a step that most European policymakers have not been ready to take. They need to cooperate so that the data can be shared and its full value realised. This paper explores the potential and the challenges that stand in the way of mobilising health data for wider health benefits. This paper goes on to summarise the results of a survey on how different components of the healthcare sector perceive the opportunities from mobilising data effectively, and the barriers to doing so. The responses demonstrated a widespread genuine will to promote research and innovation, and its take-up, for the betterment of healthcare. There was strong appreciation of the merits of data sharing and readiness - under the right circumstances - to share personal health data for research purposes and to undergo genetic sequencing. This paper also suggests the strategic direction that should influence policy formation. The solution can be found without changing the EU treaties, which already provide an adequate base for cooperation. Properly handled, the problems facing European healthcare can be turned into major assets for Europe and make it easier for citizens to have equal access to high-quality care through the meaningful use of digital innovations.

Keywords: Big data; Commission; EU; Enablers; Genomics; Innovation; Member states; Molecular diagnostics; Pan-cancer; Patient; Personalised healthcare; Rare disease; Registry; Regulatory systems; Therapeutics.

MeSH terms

  • Delivery of Health Care / organization & administration*
  • Diffusion of Innovation*
  • Europe
  • European Union
  • Genomics
  • Health Care Sector / organization & administration*
  • Humans
  • Information Dissemination
  • International Cooperation*
  • Neoplasms / genetics
  • Precision Medicine
  • Registries