Data ecosystems in healthcare

Healthcare spans a complex ecosystem consisting of private and public organisations, governmental bodies, communities, and people. Data about people’s health is no longer confined to medical records and clinical trials. For instance, some personal health data is inferred from lifestyle habits and online behaviour tracked by wearable technologies and smartphone apps. And, on an environmental level, health data is inferred from other sectors such as housing, transport, agriculture and food. Therefore, projects that seek to create value from the use of health data need to consider the wider ecosystem and understand the dependencies and interactions between stakeholders and the delivery of healthcare, commercial activities and research across sectors and jurisdictions.

Mapping out the ecosystem in which data is accessed, used and shared can be a useful way to visualise and understand this value exchange. It can help health data leaders create strategies for building a healthy data sharing ecosystem and secure investment to improve research, healthcare systems and treatment outcomes.

Figure 1, which was developed for the WHO Health Data Governance Summit, shows a typical health data ecosystem and illustrates the complexity of relationships and value flows.

Figure 1: A typical health data ecosystem

As Figure 1 shows, there are multiple stakeholders that collect, access, share and use data within the health sector. These include:

• Stakeholders, who both create and use data, such as the healthcare industry and governments.

• Data stewards, who are responsible for collecting, managing and sharing health data, such as private or public organisations with a mandate to steward data.

• Data processors, who create solutions for other stakeholders, such as digital applications, products and services.

• Data users, who use data to create new insights and products, such as researchers, analysts and organisational decision makers.