At the ODI, we want those who steward data and those who create information from this data to act in ways that lead to the best social and economic outcomes for everyone. Our theory of change identifies three activities that create impact from data:

• stewarding data – collecting it, maintaining it and sharing it
• creating information from that data – in the form of products and services, analyses and insights, or stories and visualisations
• deciding what to do – informed by information from multiple sources along with experience and understanding

Each of these activities can be carried out by individuals, companies, communities and governments, and by working together they can achieve a data future with the best outcomes for everyone - neither “data fearing” nor “data hoarding”.

• Infrastructure: Sectors and societies must invest in and protect the data infrastructure they rely on. Open data is the foundation of this emerging vital infrastructure.
• Capability: Everyone must have the opportunity to understand how data can be, and is being, used. We need data literacy for all, data science skills, and experience of using data to help solve problems.
• Innovation: Data must inspire and fuel innovation. It can enable businesses, startups, governments, individuals and communities to create products and services, fuelling economic growth and productivity.
• Equity: Everyone must benefit fairly from data. Access to data and information promotes fair competition and informed markets, and empowers people as consumers, creators and citizens.
• Ethics: People and organisations must use data ethically. The choices made about what data is collected and how it is used should not be unjust, discriminatory or deceptive.
• Engagement: Everyone must be able to take part in making data work for us all. Organisations and communities should collaborate on how data is used and accessed to help solve their problems.

To assess the policy context for secondary use of health data at European and country level, we drew on our theory of change and our manifesto to identify 22 key policy components needed to achieve an open and trustworthy data ecosystem for secondary use of health data. For each component, we proposed a ‘success indicator’ – a one-sentence statement explaining how it would operate if it was a fully functional policy area. Finally, we evaluated these success indicators in two ways:

• What is the quality of policy activity for this success indicator?
  
  The scoring range for evaluation of activities is:
  
  ￮ Having only limited aspects of the success indicator (low / 0);
  ￮ Aligned intent but missing key aspects (medium / 2);
  ￮ Fully comprehensive (high / 4).
• What progress is being made on implementation of policy for this success indicator?
  
  The scoring range for implementation of activities is:
  
  ￮ Not started (0);
  ￮ Defined (1);
  ￮ Planned (2);
  ￮ Pilot initiatives (3);
  ￮ Scaled-up implementations (4).

This approach allowed us to create a set of country rankings, and a library to demonstrate good practice or ‘what does good look like?’. This also means country and regional policymakers and ministries of health can compare themselves with their peers, and identify approaches they can adapt for their own context.


Download detailed Annexe: Methodology