Health data is highly sensitive, and subject to strict regulations and privacy rights. Making health data accessible for wider use can therefore be challenging, whether in primary healthcare, or in secondary use for research. Federated health data networks (FHDNs) have emerged as an attractive solution to ‘freeing’ this data, enabling health data to stay at the institutions they are collected at whilst allowing partnering institutions send queries and algorithms to run on the data. Although FHDNs may be a solution to the data silos and privacy concerns in healthcare and additionally enable federated learning and thus greater clinical and population studies, the establishment and operation of such networks can present numerous challenges.
In order to identify the challenges, needs and opportunities of FHDNs, DNV’s Healthcare research programme hosted a workshop bringing together global FHDN pioneers at the forefront of establishing and operating FHDNs.
This whitepaper summarises the main discussion of the workshop.
The workshop identified eight main challenges when establishing, operating, and expanding a FHDN, ranked in order of importance and visualised in the figure below .
Trust emerged as the most important enabler in all phases - establishment, operation and expansion - of a FHDN. DNV, as an independent third-party assurance and risk management company, continuously explores opportunities for continual value creation through the assurance and enabling of trust in emerging technologies.
By investigating the identified challenges and approaches in a FHDN, we aim to better understand how our independent role can enable trust between partners by supporting them, among others with data harmonisation, data governance and management, orchestration of the FHDN and federated learning, as well as other emerging roles.
If you are interested in learning more or collaborating with us, please get in touch.