Given the challenges of sharing sensitive health data, the Federal Health Data Network (FHDN) has emerged as an attractive alternative to consolidated data storage that enables health data to remain within the institutions where it was collected while allowing partner institutions to Submit queries and algorithms to run on the data.
Facilitation of decentralized data processing is seen as a factor for clinical and population studies.
However, it is not easy to create and operate such networks.
In order to identify the challenges, needs and opportunities in FHDN, the health care program from the research and development group, DNV hosted a workshop with participants representing eight different stakeholders in the field of FHDN.
The eight main challenges of the DNV workshop in the field of FHDN:
- Trust
- Infrastructure interoperability
- sustainability
- Legal and regulatory
- Data interoperability
- Network establishment
- Scalability
- Incentives
Incentivespotential approaches to address these challenges and ideal requirements; In each of the stages of establishment, operation and expansion were discussed.
Federated networks recognize access to sensitive health data at different stages and challenges, as well as provide trust and integrity to all stakeholders.
Importantly, the requirements of one challenge may have ramifications for another, and thus they may often not be resolved in isolation.
Further discussion around these challenges clearly revealed that establishing, operating and expanding FHDN requires a broad spectrum of expertise. While the technical challenges can in most instances be solved by the platform providers, the cross-disciplinary, non-technical issues need to be addressed through more diverse expertise.
Finally, although this workshop focused on the healthcare sector where FHDN are gaining recognition as the preferred solution to overcome the barriers in access to health data, it should be noted that the challenges, opportunities and potential approaches are common to and of relevance for other industries and sectors applying FNs to overcome issues of data access and distributed learning especially for commercially sensitive data.
It is hoped that papers such as this one can raise awareness of these challenges and potential solutions and inspire development in the next phases of FNs .
This WhitePaper summarizes the main discussion of the workshop.
For more information on the process and reported results, download the main article (Challenges, Needs and Opportunities In Federated Health Data Networks).
Sources:
BigMed
