In spring 2020 the Norwegian Government suggested to amend the
existing Health Registry Act and other relevant data regulations to
establish a single portal for all secondary use of health data with a
common system of governance. The reform builds on the work undertaken
under the National Health Data Programme, which was established in 2017
by the Directorate for e-Health (NDE), and the Health Registries for
Research project (2014-2019), which was aimed at improving access to
existing health data for health care improvement, monitoring, management
and research purposes (see section 2.6 in the online HiT). The reform
was further enabled by the recent (2019) changes in the Statistics Act
that allowed for a limited set of demographic and socioeconomic
variables to be linked to health data from the registries for the
purpose of health care improvement, monitoring and management and not
only for research purposes as before.
The suggested amendments
were approved by the parliament in December 2020 and enacted from
January 2021. As part of the reform, the Prescription Database (NorPD)
will be transformed from a pseudo-based registry into a registry with
unique patient identification (regulations detailing this were passed in
the Parliament in April 2021). A new organisational unit, the National
Data Service, will be established in 2021 within the NDE. The new unit
will be responsible for granting access to health data that is available
through the portal helsedata.no. The portal was established in autumn
2020 and contains information about various data sources, variables,
electronic application forms and guidance on the process of requesting
access to health data. The National Data Service will be co-located with
the National Health Archives at Tynset - a rural location in the
Eastern part of Norway.
The detailed regulation for National
Data Service will be subject to a public hearing in spring 2021. The
unit is expected to be operational - with delegated authority to
authorize access to health data - from September 2021, when production
of datasets may start. A dashboard of process and outcomes indicators
have been established to monitor the implementation of the reform. The
rural location of the unit is posing some challenges with regards to
transfer of personnel from current urban settings.
The reform supports the ‘Health, Demography and Quality of Life’ programme of the Nordic councils of Ministers, whose action areas include finding solutions on how to bridge Nordic health data and personal data for utilization in the Nordic health ecosystems. Finland and Denmark have both recently established national health data portals in support of this programme.