From launch towards permanent operation
Findata was established in 2019 to provide one-stop-shop permit and data set services for users of social welfare and health care data. Our work was launched stepwise in 2020. The establishment phase of the new authority and recruitment of personnel were completed in 2021.
As our personnel grew, we restructured Findata’s organisation to lend better support for the agency’s work by assigning the provision of data services to two teams: the Permits and guidance team and the Data team. The post of a Development Manager was inaugurated to support the development of services and systems. After the summer, we recruited five fixed-term employees to cope with the high demand for our services.
In autumn 2021, the process of handling applications was finetuned in a lean project, during and after which the working methods and work guidance were revamped. We managed to almost double the number of pending applications and to shorten the waiting times towards the end of the year.
Findata’s secure Kapseli remote access environment was audited by an information security audit body in spring 2021. We issued a regulation on the data contents, concepts and information structures of data descriptions in February 2021, and we supported controllers throughout the year in drawing up data descriptions by providing tools and training. We also prepared a regulation on the structures of data permit applications and data utilisation plans as laid down in the Act on the Secondary Use of Health and Social Data as well as launched an update of the regulation on secure operating environments published in 2020.
“In autumn 2021, the process of handling applications was finetuned in a lean project, during and after which the working methods and work guidance were revamped. We managed to almost double the number of pending applications and to shorten the waiting times towards the end of the year.”
– Johanna Seppänen, PhD, Director
Developing the agency’s functions and putting its operation on a permanent footing were in a key role in 2021. The year was also characterised by a higher than expected demand for our services at times. A significant public debate took place on the organisation of the secondary use of health data and, in particular, the fees charged for the data sets. Controllers’ cooperation groups worked actively, and efforts to improve cooperation with customers gained momentum thanks to a new customer working group.
International activities continued intensively: Findata participated in the European Commission’s TEHDAS project and prepared a European Health Data Space pilot in cooperation with France. The secondary use of health data and Finland’s unique data repositories and infrastructure continued to attract interest both in Finland and in international forums: despite the pandemic, Findata clocked up 75 discussion contributions, panel discussion participations and presentations at various events.
Johanna Seppänen, PhD, Director
2021 IN FIGURES
Applications and decisions
In 2021, we received a total of 312 applications and made a total of 262 decisions. The processing times of applications varied from 1 to 440 days. The median of processing times was 80 days.
The share of amendment applications in the applications received during the year increased by 16 percentage points compared to 2020. The shares of both new data permit applications and data requests decreased by 8 percentage points.
The share of expiry decisions fell to 20% after being as high as 33% in the first year of operation in 2020.
52% data permit applications
42% amendment applications
6% data requests
77% positive decisions
20% expiry decisions
3% transfers of administrative matters
For all the permits granted by us and permit holders, visit here: Permits issued
Intended use indicated in the application
The shares of intended uses remained similar as in 2020. The majority of applications concerned scientific research.
While compiling statistics was the next most common intended use, its share was as low as 3%.
A total of ten applications concerning the authorities’
planning and reporting duties, development and innovation and the training of social and health care personnel were received.
| Intended use referred to in the Act on the Secondary Use of Health and Social Data | Number | Percentage |
| Scientific research | 294 | 94% |
| Statistics | 8 | 3% |
| Planning and reporting duties of an authority | 4 | 1% |
| Development and innovation | 3 | 1% |
| Training | 3 | 1% |
Controllers and organisations associated with the highest numbers of applications
The highest demand focused on national registers. Approximately 75% of the applications concerned data in the registers of the three most popular controllers: Finnish Institute for Health and Welfare (THL), the Social Insurance Institution (Kela) and/or Statistics Finland.
Data sets of the hospital districts were the next most popular. In total, applications were submitted for the data of around 90 different controllers or organisations in 2021.
| Controller | Number of applications |
| Finnish Institute for Health and Welfare (THL) | 113 |
| Kela | 66 |
| Statistics Finland | 51 |
| Digital and Population Data Services Agency (DVV) | 29 |
| Hospital District of Helsinki and Uusimaa (HUS) | 27 |
| Southwest Finland Hospital District (VSSHP) | 27 |
| Finnish Centre for Pensions (ETK) | 15 |
| Pirkanmaa Hospital District (PSHP) | 14 |
| North Savo Hospital District (PSSHP) | 11 |
| Northern Ostrobothnia Hospital District (PPSHP) | 8 |
Applicants’ backgrounds
As in the previous year, most of the applications were submitted by public sector actors.
The share of private sector applicants increased by 14 percentage points to 29% year on year. The share of third sector applicants remained more or less the same.
We compile statistics on the applicants’ backgrounds based on the main applicant. Some of the permits were granted to projects or consortia that involve other sectors besides the main applicant.
| Applicant | Number | Percentage |
| Public sector | 206 | 66% |
| Private sector | 91 | 29% |
| Third sector | 14 | 5% |
Data requests and deliveries
Kapseli®
At the end of 2021 Kapseli, the secure environment offered by Findata for data processing, had 52 on-going projects with a total of 271 users. Users subscribe to Kapseli on a monthly basis, and the number of environments and users consequently varied throughout the year.
The computing capacity used by customers was distributed evenly. XL capacity, which was only needed by one customer at the end of the year, was an exception.
| Computing capacity | Number | Share |
|---|---|---|
| Small | 19 | 37 % |
| Medium | 15 | 29 % |
| Large | 17 | 33 % |
| Extra large | 1 | 2 % |
Distribution of costs of register data use
A total of approximately EUR 1.33 million was paid for the secondary use of social welfare and health care data through Findata in 2021. This figure includes all fees for decisions concerning new data permits, amendment permits and data requests, as well as the controllers’ data extraction costs and subscription fees for Kapseli environment.
With regard to decisions concerning data extraction, about 13% of the total bill charged to customers consisted of Findata’s decision fees and data processing costs, which arise from combining data sets collected from controllers, pseudonymisation or anonymisation, and delivering the data to a secure operating environment.
Respectively, on average 87% of the total bill paid by the customer consisted of data extraction costs charged by controllers to customers.
Website
Events and presentations
Social media channels
HIGHLIGHTS IN 2021
See also: Findata’s annual report 2020 (PDF, 365 kt)
A concise summary of the first year of operation.
