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Secondary use of social and health care data: the lessons learnt in Finland Passed

Wednesday May 24, 2023 11:10 - 11:35 F5

Lecturer: Peija Haaramo

Track: Eng - European Health Data Space, EHDS

Act on the Secondary Use of Health and Social Data came into effect in Finland four years ago, in May 2019. Due to the Act, a new authority was established in Finland: The Finnish Social and Health Data Permit Authority Findata.

Findata’s goal is to streamline and secure the secondary use of Finnish social welfare and health care data. It is the world's first one-stop shop that issues permits for all social and healthcare data in a centralized manner. These datasets include, among other things, information about health, treatment of diseases, and related benefits from the national registers, as well as data about the patient care given by public and private healthcare providers.

Based on the Act, data can be used for several different purposes: scientific research, statistics, development and innovation activities, education, knowledge management, steering and supervision of social and health care by authorities, and planning and reporting duties of authorities.

In addition to issuing permits, Findata's tasks include e.g. advising clients and other stakeholders, gathering data from controllers and pseudonymizing or anonymizing them, and delivering data to the clients in a secure processing environment.

Findata has been issuing permits for three years now. This presentation describes Finland's experiences on secondary use – the successes, and the challenges. This issue is particularly topical right now, as the entire EU is planning on taking similar steps towards the European Health Data Space.


Topic

Data Governance

Language

English

Seminar type

Live broadcast

Objective of lecture

Orientation

Level of knowledge

Intermediate

Target audience

Management/decision makers
Researchers

Keyword

Actual examples (good/bad)

Conference

Vitalis

Lecturers

Profile image for Peija Haaramo

Peija Haaramo Lecturer

Chief Specialist, PhD
Findata (Social and Health Data Permit Authority)

Dr. Peija Haaramo works as a Chief Specialist for Findata, the Finnish Social and Health Data Permit Authority. She has a PhD in Public Health Research and a Master’s Degree in Social Sciences. Dr. Haaramo has long experience working as an epidemiological researcher at the Finnish Institute for Health and Welfare and the University of Helsinki.

Dr. Haaramo’s current tasks at Findata include planning and coordinating the work towards a national metadata catalogue on data included in health and social registers. She is also Findata’s Project Manager in EU-funded projects TEHDAS and HealthData@EU Pilot, the both of which aim to advance the European Commission’s initiative on the European Health Data Space.