Secondary use of health data – an Nordic perspective (2021-04-21)

This is the second of two conferences on the subject. The former focused on EU and European Health Data Space. This conference will emphasize Nordic initiatives.

Preliminary program:

Secondary use of Health data – a Nordic outlook

Findata – A new government agency for facilitating secure secondary use of health data
Johanna Seppänen, Ph.D., Director
Social and Health Data Permit Authority Findata

The Danish framework for health data sources
Legislation, governance, and quality management of different health data sources and the actual process for data access for researchers.
Henrik Hammer Jordt, Dr Scient.
Chief enterprise architect

The Norwegian health data program, the new Health Data Permit Authority, and Health analysis platform
Håvard Kolle Riis, PhD
Director of Health Data, Norwegian Directorate of eHealth

A Nordic Health Data Commons
Maria Nilsson
Special Adviser, NordForsk

Secondary use of health data means that data from healthcare are ”reused” in various ways to contribute to increased knowledge and usefulness.

About

Findata is the Health and Social Data Permit Authority, and its activities are based on the Act on the Secondary Use of Health and Social Data (552/2019). Findata improves the data security of data materials containing health and social data and enables more efficient utilization of these materials.

Findata will operate in conjunction with the National Institute for Health and Welfare but separately from the Institute’s other activities. The authority’s operation will be initiated stepwise.

Findata issues permit for the secondary use of health and social data when

  • data from several different controllers is combined
  • the register data originates from private social welfare and health care service providers
  • the data is stored in Kanta services. Findata will process applications related to medical record data in the Kanta services from the beginning of 2021, applications related to e-prescription data can be processed already now.

Danish framework for health data sources
The presentation will focus on legislation, governance, and quality management of the different health data sources and the actual process for data access for the researcher. The presentation will give Danish input to WP5 and WP6 to the TEHDAS program (Towards the European Health Data Space).

In his daily work, Henrik Hammer Jordt is chief enterprise architect in Central Denmark Region, and director of it-architecture function in the It-department. He also holds the position of chairman of the architectural board of the Danish Regions, RITA (Regionernes IT-Arkitekturråd).

There are many understandings of it-architecture work. For Henrik architecture is about work processes, data and dataflow, and IT within the frames of strategy, governance, legislation, security, and financial possibilities. Analyses of architecture must always start with an understanding of goals, work processes, and information needs before new technology are considered.

Organizers:

The working group for health data, the Government’s collaboration program for health and life sciences

  • Life Science Office, Government Offices
  • The Swedish eHealth Agency
  • STUNS Life Science