Responsible and Trustworthy Data Sharing

The use of real-world data to support AI- and clinical decision support tools requires trusted, interoperable data sharing approaches. Methods to enhance legal access to data and tackling data-silos help meet these needs in a patient-centric healthcare ecosystem.
Genome and doctor graphic

We work with hospital, research, and legal stakeholders to address the interoperability, risk, and trust issues that hinder data sharing for clinical and research purposes.

Contact us:

Sharmini Alagaratnam

Sharmini Alagaratnam

Project Manager, Principal Researcher

Much knowledge stands to be generated from today’s patients and their data, which has the potential to guide treatment tomorrow. Yet fragmented and incompatible data systems and a lack of legal clarification around the secondary use of such data, in particular across national borders, often stand in the way of the development and use of this knowledge. 

In DNV, we believe that health data should be interoperable and accessible within a patient-centered ecosystem based on transparency, accountability and trust. Through selected projects, our Healthcare research programme explores needs and develops approaches, methods and tools that support this vision. 

One example is in the field of dynamic consent, which supports the agency of patients in managing their data sharing preferences on a continuous basis and has the potential to enable patient centricity in comprehension and decision making. Our work explores responsible use of dynamic consent, and the associated need for assurance.

Even when health data can legally be accessed, it often remains siloed due to challenges in usability, scalability and interoperability, limiting the potential for development of health-specific AI- and clinical decision support tools built on real-world data. We work with clinical, research and legal stakeholders on risk and trust issues to overcome these barriers and enable data sharing, specifically through the application of federated networks as a solution to enable access to diverse data sets. 

The Horizon 2020 project REALMENT, where DNV is a partner, aims to use the federated network approach to develop a real-world data platform and a clinical management platform to improve and optimize treatment of mental disorders through novel precision medicine strategies. DNV is leading exploratory activities identifying and analysing trust needs for safety, security and transparency as well as assessing regulatory requirements and guidelines to enable lawful and ethical access to data sets and data sharing for further data exploitation by independent parties.

DNV is also a partner in the Horizon 2020 project AI-MIND, which aims to revolutionize early detection of dementia and mild cognitive impairment using artificial intelligence. Here we are co-leading the work package developing data sharing, governance and protection guidelines and frameworks, as well as database implementation and data ingestion with continuous assurance. 

Contact us:

Sharmini Alagaratnam

Sharmini Alagaratnam

Project Manager, Principal Researcher