How well is your country doing on policy for secondary use of health data?

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About this tool

An open and trustworthy health data ecosystem can help Europe respond to the multiple urgent challenges facing society and the economy today. Health data can be reused and shared, de-identified, anonymised, and aggregated to generate new insights and optimise population health, improve the patient journey, create more efficient healthcare systems, and foster innovation.

Secondary use of health data enables a wide range of use cases and benefits across the entire healthcare system, including opportunities to optimise health
service delivery, to reduce health inequalities through better allocation of resources, and to be used to help enhance personalised healthcare - for example, by comparing health interventions for others with similar characteristics. Secondary use of data is also a key element in innovation: secondary use of health data can be used to extend research datasets to assess whether new therapies would work for a broader population cohort.

Country rankings

To assess the European policy context for secondary use of health data at both the pan-European and country level, we drew on the ODI’s manifesto of elements for open and trustworthy data ecosystems to create a framework of key policy components needed. For each component we then scored EC and country-level policies against two measures:


  • What is the quality of policy activity for this component?
  • What progress is being made on implementation?
This approach allowed us to create a set of country rankings across different dimensions, and a library of good practice to explore “what does good look like?” in a practical way, and so that country and regional policy-makers and Ministries of Health can usefully compare themselves with their peers and identify approaches and templates that they can steal with pride.

Country groupings

We clustered these country rankings into four broad groups:
  • Leaders: countries where the quality of policy is stronger and the stage of implementation is more advanced.
  • Limited energy: countries where the quality of policy is stronger but the stage of implementation is less advanced.
  • Limited vision: countries where the quality of policy is weaker but the stage of implementation is more advanced.
  • Less prepared: countries where the quality of policy is weaker and the stage of implementation is less advanced.

European Union

Country Profile 1
An open and trustworthy health data ecosystem can help Europe respond to the multiple urgent challenges facing society and the economy today. Health data can be reused and shared, de-identified, anonymised, and aggregated to generate new insights and optimise population health, improve the patient journey, create more efficient healthcare systems, and foster innovation.
Overview 2
An open and trustworthy health data ecosystem can help Europe respond to the multiple urgent challenges facing society and the economy today. Health data can be reused and shared, de-identified, anonymised, and aggregated to generate new insights and optimise population health, improve the patient journey, create more efficient healthcare systems, and foster innovation.
Challenges: Top Policy Barriers 3
An open and trustworthy health data ecosystem can help Europe respond to the multiple urgent challenges facing society and the economy today. Health data can be reused and shared, de-identified, anonymised, and aggregated to generate new insights and optimise population health, improve the patient journey, create more efficient healthcare systems, and foster innovation.
Opportunities: Policy Momentum 4
There are recent systemic changes directed to value-based healthcare implementation and centralization. The Ministry of Health sees opportunities in data driven decision making processes for healthcare.

Almost 100% of the population is covered by electronic healthcare records interoperable systems.

In 2019, the Medical Research Agency was created. This is a state agency responsible for development of scientific research in the field of medical and health sciences, with a purpose to build an innovative healthcare system.

The latest legislative change resulting from the Act on Medical Fund (entry into force = end of 2020) mandates entities to update disease registers to provide certain medical information to AOTMIT (Agency for Medical Technology Assessment and Tarification). AOTMIT will be obliged to prepare an analysis comparing the effectiveness of reimbursed innovative therapies with the alternative methods of treatment (on the basis of data provided by the public caregivers). This may raise the recognised importance of maintaining disease registers.

European Union

Country Profile
An open and trustworthy health data ecosystem can help Europe respond to the multiple urgent challenges facing society and the economy today. Health data can be reused and shared, de-identified, anonymised, and aggregated to generate new insights and optimise population health, improve the patient journey, create more efficient healthcare systems, and foster innovation.
Overview
An open and trustworthy health data ecosystem can help Europe respond to the multiple urgent challenges facing society and the economy today. Health data can be reused and shared, de-identified, anonymised, and aggregated to generate new insights and optimise population health, improve the patient journey, create more efficient healthcare systems, and foster innovation.
Challenges: Top Policy Barriers
An open and trustworthy health data ecosystem can help Europe respond to the multiple urgent challenges facing society and the economy today. Health data can be reused and shared, de-identified, anonymised, and aggregated to generate new insights and optimise population health, improve the patient journey, create more efficient healthcare systems, and foster innovation.
Opportunities: Policy Momentum
There are recent systemic changes directed to value-based healthcare implementation and centralization. The Ministry of Health sees opportunities in data driven decision making processes for healthcare.

Almost 100% of the population is covered by electronic healthcare records interoperable systems.

In 2019, the Medical Research Agency was created. This is a state agency responsible for development of scientific research in the field of medical and health sciences, with a purpose to build an innovative healthcare system.

The latest legislative change resulting from the Act on Medical Fund (entry into force = end of 2020) mandates entities to update disease registers to provide certain medical information to AOTMIT (Agency for Medical Technology Assessment and Tarification). AOTMIT will be obliged to prepare an analysis comparing the effectiveness of reimbursed innovative therapies with the alternative methods of treatment (on the basis of data provided by the public caregivers). This may raise the recognised importance of maintaining disease registers.
Ecosystem Policy Environment
Secondary use of health daya policy is a national priority
Overview
An open and trustworthy health data ecosystem can help Europe respond to the multiple urgent challenges facing society and the economy today. Health data can be reused and shared, de-identified, anonymised, and aggregated to generate new insights and optimise population health, improve the patient journey, create more efficient healthcare systems, and foster innovation.
Quality of policy
Low
Medium
High
Speed of implementation
4 /4
➝ Read more
Ecosystem Policy Environment
Secondary use of health daya policy is a national priority
Overview
An open and trustworthy health data ecosystem can help Europe respond to the multiple urgent challenges facing society and the economy today. Health data can be reused and shared, de-identified, anonymised, and aggregated to generate new insights and optimise population health, improve the patient journey, create more efficient healthcare systems, and foster innovation.
Quality of policy
Low
Medium
High
Speed of implementation
4/4
➝ Read more