Finnish Research Infrastructure for Population Based Surveys (FIRI-PBS)

FIRI-PBS is a distributed research infrastructure owned jointly by the partners of the consortium and it's on preparation phase. FIRI-PBS was accepted to the Finnish Infrastructure Roadmap in December 2020.

FIRI-PBS will focus on information for population based health research which can be obtained through

• questionnaire based health surveys,
• health examination surveys which include questionnaires, physical measurements such as blood pressure and anthropometrics, and collection of biological samples such as blood and urine, and
• linkage of survey data to different national registers with information on hospitalizations, social benefits, socio-economic data, and mortality, etc.

Some of the information used in health research may also come from sales statistics, spatial statistics/records, living and working environment, legislation and regulations, etc. Combinations of different data sources provide an extensive database which allows a holistic, multidisciplinary approach to examine health and its determinants, to develop prevention and treatment innovations, and support evidence-informed policy decisions.

Goals

The mission of this research infrastructure is

• To enhance active use of existing and newly collected population based survey data in both national and international research initiatives and multidisciplinary collaborations.
• To increase knowledge and use of common standardized tools for collection of new survey data.
• To enhance data quality and cost-effective collection of new data.

The aim of this research infrastructure is to provide support for researchers and research groups

• In accessing and using the existing survey data by supporting the FAIR (Findable, Accessible, Interoperable, Reusable) principle.
• In preparation a new survey by facilitating the use of standardized and validated methods and instruments to enhance comparability of the outcomes/results between studies and over time.

Following services and tools will be established for the FIRI-PBS in a step-wise approach, i.e. not all services will be available from the beginning. 

Description of the RI partners and their competences, i.e. catalogue of experts in Finland in the field of population based health surveys.

A searchable data catalogue will include information, on standardized format, about existing data sets owned by the consortium partners. Information will include: target population, timing of the data collection and details of the collected information. Also information about post-harmonization of variables, coverage of the ethical approval and informed consent. Supports the FAIR principle, i.e. has also information about access to the listed data sets.

Population based survey methods catalogue will include information about existing and used standardized questionnaire modules and other survey methods such as physical health measurement protocols, translation of questions for different languages, information about possible validation of the questionnaire modules/measurement protocols and post-harmonization protocols/rules established for available data collections.

ELSI and FAIR guidelines including generic examples of the information material and informed consents full-filing the GDPR requirements while ensuring as broad use of collected data as possible and required record linkage to other data sources.

A tool box will include a collection of guidelines, program codes and other practical tools. Guidelines would include topics such as record linkage and survey non-response management. Program codes would be for example R-codes used for data cleaning. Practical tools would support management of the informed consent and participant's right to check collected personal information as well as remote data access and analysis system.

Capacity building, training possibilities, e-learning materials, webinar etc. about use and collection of population based health survey data will be organized.

Partners

Finnish Institute of Occupational Health, University of Helsinki, University of Eastern Finland, Tampere University, University of Turku and University of Oulu

Contact information

Hanna Tolonen
Leader of the Research Infrastructure, Research Manager
tel. +358 29 524 8638
e-mail: [email protected]