Methodology

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”..

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. We believe these areas for open and trustworthy data ecosystems apply in any domain, sector, or jurisdiction: infrastructure, capability, innovation, ethics, equity and engagement.

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 in two ways:

What is the quality of policy activity for this indicator?

The evaluation range for 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 indicator?

The scoring range for the policy implementation stage 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

Methodology

Policy for secondary use of health data

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