Despite the fact that the European Commission has successfully managed to drive the collection of ‘hard’ data, there remain considerable gaps and challenges in health data coverage.

EU Member States have developed significantly different approaches to monitoring and assessing healthcare system performance. Countries also record and store health data differently as wide variations are being observed in the definition of medical indicators and structure of electronic health records (EHRs) while only few countries have introduced a single patient identifier (SPI) systems facilitating cross-border, integrated care.

Ensuring data standardisation and interoperability is just, however, one part of the solution. EU healthcare systems tend to measure inputs (e.g., healthcare spending), processes (e.g., blood pressure check), and outputs (e.g., blood results) but do not sufficiently take into account outcomes (e.g., quality of life indicators) which matter most to patients. In addition, there is no standardised approach to collecting, analysing or interpreting patient-reported outcomes (PROs) in clinical trials and evidence shows that patients’ involvement in the development of PROs remains limited.

To drive the transition towards outcomes-based health care, we recommend to:

  1. Boost the collection of patient outcomes data by ensuring that PROs questionnaires are elaborated with patients, fostering the inclusion of PROs as primary outcomes along with traditional clinical endpoints in clinical trials, and expanding the collection and use of real world evidence (RWE);
  2. Set up common core indicators (including patient outcomes data) for health systems assessment frameworks (HSPA) frameworks to run benchmark assessments, learn from best practices, and deliver policy change;
  3. Launch an EU multi-stakeholder Expert Group to drive political momentum, leverage existing outcomes-based initiatives, collect recommendations and provide country-specific guidance to Member States on how to adopt such indicators and standards;
  4. Complete the implementation of electronic health reports (EHRs) and move towards the implementation of Single Patient Identifier (SPI) systems across the EU; and,
  5. Incentivise and empower countries by developing an EU-wide repository of existing initiatives improving patient outcomes, sharing guidance on outcomes-based healthcare in the European Semester review, and integrating outcomes-based healthcare in education curricula.

Boosting healthcare outcomes in Europe

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