Using healthcare data for other purposes: Infectious Diseases Data Observatory

Key findings

• Greater collaboration across research institutions in sharing data and crediting sources in international studies.

• Increased use of data to define new therapeutic guidelines that improve treatment of patients with rare diseases.

Enabling secondary use of data

When data collected for healthcare is used for anything other than the primary healthcare event at which it was collected, it is defined as a secondary use. Secondary (or ‘further’) use of health data is defined in Europe under the General Data Protection Regulation as uses that are compatible with the primary purpose, but that were not explicitly stated at the time of data collection. Other jurisdictions may define secondary use in other ways, and even in Europe, individual countries are defining secondary use of health data more explicitly to refer to data collected from a specific range of sources that aid health decision-making and interventions.

Improving outcomes using patients’ data

The Infectious Diseases Data Observatory (IDDO) is a coalition of the global infectious disease and emerging infections communities. It aims to enable the sharing of individual patient data from observational studies, health records and clinical trials; making it available for use by researchers, healthcare providers and public health agencies. To ensure secondary use of data for better healthcare outcomes, IDDO has in place the following data governance processes:

• Visual schematic describing IDDO's data access journey.

• Terms of Submission that data providers must agree to meet in order to demonstrate local consent for sharing and accessing data.

• Data access guidelines and registrations to access assessed by a Data Access Committee.

• Privacy Impact Assessments.

A digital platform is created for each disease area for which IDDO collects data. Creative Commons licences are used to enable data sharing.

What can we learn from this case study?

To demonstrate trustworthiness in the healthcare ecosystem, for each disease area platform, a full list of all ecosystem stakeholders who are granted access to datasets is listed.

IDDO is communicating the benefits of data use to improve data sharing. A regular series of news announcements are made to demonstrate how the data is used to advance health outcomes. For example, pooled research has enabled new therapeutic guidelines to be developed for rare tropical diseases.