ODI’s theory of change

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”.

ODI’s manifesto

Our manifesto identifies six areas in data ecosystems that we believe will help us to achieve our vision of a world where data works for everyone. These are:
  • 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.
We believe these areas for open and trustworthy data ecosystems apply in any domain, sector, or jurisdiction. Here, we’ve used it to policy environments for secondary use of health data in the European region, to explore ‘What does good look like?’.

Policy for secondary use of health data

Health data is a term used to describe all the information generated through the process of delivering healthcare to populations, including disease registries, public health surveys, clinical trial data, insurance claims and electronic health records.

Primary use of health data is when health data is used to deliver healthcare and to make decisions about the care of the individual from whom it was collected.

Secondary use of health data is the use of aggregated health data from population-level sources – such as electronic health records, health insurance claims data and health registry data – to improve personal care planning, medicines development, safety monitoring, research, and policymaking.
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.

All the data in our report was correct at time of going to press in September 2021; for this digital tool, data for a timeline of EC activities was added in June 2022.

Download detailed Annexe: Methodology