Scaling up the Big Health Data Ecosystem: Engaging all Stakeholders!

Abstract

There is now an urgent need to scale up our collective capability to learn insights from health data, to improve patient care pathways and health services, to ensure that public health measures and strategies are underpinned by real time evidence, and to accelerate research such as the development of drugs, vaccines and AI algorithms. Europe is investing within and across countries in research infrastructures to enable this scaling up, most frequently through federated architectures. The latest development is the plan from the European Commission to create a European Health Data Space. However, any architecture to combine data or to run distributed queries is critically dependent upon the data being held or mapped to a standardised form (structurally and semantically). Standards exist to achieve this, although more stakeholder engagement is needed in defining practical clinical models and value sets, but the real adoption of interoperability is disappointing and needs further incentivisation and investment. Data quality is another concern that can only be improved if there is awareness that this is important, a willingness to invest and a recognition that many stakeholders need to become motivated to improve quality. Scaling up the uses of data also means involving new actors such as industry. Societal trust is a vital prerequisite for enabling novel uses of data. Transparency is a critical success factor for trust. Data access governance rules must be developed through open public consultation. The bodies who make access decisions must publish information about the data accesses they have permitted. For the public to be on board they have to understand much more than most people do about the nature of health data, how it can be used for the benefit of society and what safeguards protect them when the data are used.