Annual Report 2021

From launch towards permanent operation

Read about how our operations developed in 2021. Read more From launch towards permanent operation

2021 in figures

See key figures describing the processing of applications, data sets, intended uses, fees etc. Read more 2021 in figures

Highlights of the year

See key news highlights of the year at a single location. Read more Highlights of the year

Our services

Read more about our services. Read more Our services

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.

312

applications

6 applications/week

52% data permit applications
42% amendment applications
6% data requests

262

decisions

5 decisions/week

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 DataNumber Percentage
Scientific research29494%
Statistics83%
Planning and reporting duties of an authority41%
Development and innovation31%
Training31%

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.

ControllerNumber of applications
Finnish Institute for Health and Welfare (THL)113
Kela66
Statistics Finland51
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.

ApplicantNumberPercentage
Public sector20666%
Private sector9129%
Third sector145%

Data requests and deliveries

375

submitted data requests

7 requests/week

331

data sets received

6 sets/week

330

data sets delivered

6 sets/week

72

data packages delivered

4 to 5 sets/package

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 capacityNumberShare
Small1937 %
Medium1529 %
Large1733 %
Extra large12 %

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.

270 300 €

Findata

Fees charged to customers for permit decisions, data processing and Kapseli subscriptions.

1 062 600 €

Controllers

Data extraction costs charged by controllers to customers.

Website

14 000

visitors

1 200 / month

29 000

visits

2 400 / month

80 000

pages viewed per session

3 pages / visit

Events and presentations

15

events and training

organised by Findata.

75

presentations

at Finnish and international events organised by others.

Social media channels

986

Twitter

+ 204 followers compared to 2020.

1 430

LinkedIn

+ 411 followers compared to 2020.

943

uutiskirjeen tilaajaa

+ 513 subscribers compared to 2020.

HIGHLIGHTS IN 2021

The transition period related to requirements for secure operating environments extended by one year

31.08.2021
Under an amendment to the Act on the Secondary Use of Health and Social Data that entered into force in September 2021, the transition period for audited secure operating environments was extended until 30 April 2022. Following this amendment, the precondition for transferring data to unaudited operating environments is having a fixed-term data permit valid until no longer than 30 April 2022. Read more The transition period related to requirements for secure operating environments extended by one year

Invitation webinar: First Steps of the Secondary Use Act

On 7 April 2021, we organised a webinar for invited participants together with the Ministry of Social Affairs and Health. The purpose of the webinar was to bolster the secondary use ecosystem, highlight Finland’s unique situation and create a shared vision of future development. Further information on the Secondary Use Act Invitation webinar: First Steps of the Secondary Use Act

We issued a regulation on data descriptions for the secondary use of health and social data

The purpose of the data description regulation is to define common principles for describing social welfare and health care controllers’ data sets and the data they contain. The controllers referred to in the Act on the Secondary Use of Health and Social Data must prepare descriptions of the data content in their repositories. These controllers include public service providers in social welfare and health care. Read more We issued a regulation on data descriptions for the secondary use of health and social data

How to ensure efficient and secure use of health data beyond borders? France and Finland collaborating to find answers

23.11.2021
We signed a memorandum of understanding on two-year cooperation with the French Health Data Hub in November 2021. Both France and Finland have undergone major systemic changes in the secondary use of health data in recent years, as has entire Europe since the GDPR entered into force. Read more How to ensure efficient and secure use of health data beyond borders? France and Finland collaborating to find answers

Findata’s remote access environment is now called Kapseli

29.09.2021
The name Kapseli identifies the operating environment of the data permit authority Findata and separates it from other service providers’ environments. The shorter name is also easier to use. As the environment was named, the instructions provided on the website were also updated. From now on any support requests, questions and other messages related to Kapseli should be sent to the e-mail address kapseli@findata.fi. Read more Findata’s remote access environment is now called Kapseli

See also: Findata’s annual report 2020 (PDF, 365 kt)

A concise summary of the first year of operation.

SERVICES

Guidance

We offer general guidance on our services by email at info@findata.fi. In questions related to data deliveries, please contact data@findata.fi, and any queries related to Kapseli operating environment should be addressed to kapseli@findata.fi. Read more Guidance

Permits and amendment permits

We grant permits for the secondary use of social and health data when data sets from several public controllers, private service providers or Kanta services are needed. We also look after the permits if the controller has transferred the authority to issue them to Findata. Read more Permits and amendment permits

Data requests

We are responsible for all data requests, regardless of whether the request is for data from numerous controllers or a single one. Statistical data accessed by means of a data request are delivered to the customer, and the same information security requirements do not apply to analysing them as to the analysis of data concerning individuals. Read more Data requests

Data

We compile and combine data and look after their pseudonymisation or anonymisation. We also support controllers in creating data descriptions. Read more Data

Kapseli®

For data processing, we provide a secure environment named Kapseli, in which key programs required for analysing the data are available. Read more Kapseli®

Anonymisation

If the applicant only requires a single controller’s data in anonymised form, we will anonymise the data on behalf of the controller and deliver it to the permit holder for processing. Read more Anonymisation

Do you need social and health data for secondary purposes? See below where to apply for the permits from.

Select the controllers from which the data will be retrieved

Apply permit from the controller in question. The exception is those controllers who have delegated jurisdiction to Findata.

Apply permit (s) from the controllers in question.

Findata is responsible for data permits of the Finnish Center for Pensions and the Finnish Digital Agency and / or Statistics Finland if the data are combined with

  • data of other public organizations under the Act on Secondary Use of Health and Social Data
  • data stored on Kanta services or
  • to the register data of a private social or health care service provider.

Apply permit from Findata.

Findata is responsible for processing and making decisions concerning data permit and amendment applications, when the application applies to data from numerous public social and health sector controllers.

Apply permit from Findata.

Findata is responsible for processing and making decisions concerning data permit and amendment applications, when the application applies to:

  • data from numerous public social and health sector controllers
  • register data from one or numerous private social welfare and health care service organisers, or
  • customer data saved in the Kanta Services.

Apply permit from Findata.

Finnish Institute for Health and Welfare (THL) and The Regional Administrative Agencies (AVI) have delegated the jurisdiction to Findata.

As far as THL is concerned, the delegation of jurisdiction does not apply to its

  • internal permit management
  • data collected as a statistical authority
    nor
  • the transfer of samples and data transferred to THL Biopankki.

Apply permit from Findata.

Findata is responsible for processing and making decisions concerning data permit and amendment applications, when the application applies to:

  • data from numerous public social and health sector controllers
  • register data from one or numerous private social welfare and health care service organisers, or
  • customer data saved in the Kanta Services.