Why data governance is important in healthcare

Data is the lifeblood of any modern healthcare system. It has the enormous potential to address societal and economic health challenges like the early detection, screening and monitoring of non-communicable diseases, for instance Parkinson's. In order to achieve this modern healthcare requires access to, and use of, health data at each stage of the patient journey. 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.

The outbreak of the coronavirus (Covid-19) has amplified and accelerated the need for an open, trustworthy data ecosystem that benefits everyone’s health to enable this. However, we know from recent research that patients, projects and organisations stewarding health data can find it hard to see the benefits of data sharing, trust across the data ecosystem is weak and the willingness to share data is low.

Projects and organisations innovating with health data need support to demonstrate they are accessing, using and sharing data in trustworthy ways, while minimising harm to the individuals or communities the data is about. Data governance ensures the data assets, people, policies, processes, standards and technologies are in place within projects and organisations to build trust and create value from data. This playbook provides the foundational materials to support this.

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