Text: Kaisa Järvelä
Health and Social Service Data Available from One Source in a Few Years' Time
The "Isaacus – the Digital Health HUB" project, which was launched in the fall of 2015, is well underway. The aim of the Sitra funded and run project is to plan and create a one-stop service that would help researchers through the whole data acquisition process, starting from user permits obtained from different data providers to ethical reviews, data provision, and secure working environment. The aim is to pilot the service by the end of year 2017.
–The idea behind the project was that valuable health and well-being data buried in different organizations must be utilised more effectively, explains the leading expert Kimmo Hahkola from Sitra.
According to Hahkola, the problem in Finland is that even though a lot of health and well-being data are collected, the data are usually only used once and by the producing organisation as the information of such data is dispersed and hard to find.
A major barrier to the reuse of data has been the fact that researchers have had to acquire user permits separately from each register holder. Furthermore, there have been no study descriptions available for the majority of datasets.
Secure data service environment planned
The new health and well-being data service operator will make data reuse significantly easier as it allows researchers to access national well-being surveys, biobank data and data from different registers.
–The service operator will be especially useful when researchers need data from several different organisations, explains Haahkola.
One aim of the project is to create a secure remote acces system where researchers can use sensitive data. The secure environment will guarantee that the data are complete and information obtained from different data sources can be combined without risking anyone's confidentiality.
New legislation likely to come into effect in January 2018
The construction of the service operator has required changes to the Finnish legislation. The new law will define what kinds of data can be combined, what kind of a consent is required for the reuse of data and what kind of platform is required for data use.
A draft for the proposed legislation on secondary use of health and social data will be sent to key stakeholders for consultation in the early spring of 2016. The goal is for the new law to come into effect in January 2018.
According to Haahkola, the bill draft is not perfect but sufficient in the sense that it enables the construction of a one-stop service operator.
THL proposed as the issuing authority
The bill proposes that the National Institute for Health and Welfare (THL) would be named as the issuing authority for the service operator.
In practice, this would mean that the THL would be responsible for granting permits whenever permits are required from several register holders for the same use purpose.
Haahkola believes that the service operator will significantly decrease the time for data delivery. Currently, it may take several years for a researcher to have access to all relevant data. The new service operator should allow researchers to access data in no more than five months.
Pre-production projects well underway
Three major Isaacus pre-production projects were launched in 2016.
The data pool project, headed by the hospital district of Helsinki and Uusimaa, aims to gather as much raw data on well-being as possible from the hospital district. The data pool solution will be based on open source code.
Another key project is the metadata project headed by the National Institute for Health and Welfare. The Finnish Social Science Data Archive is also a member in this project which aims to create and publish a national online catalogue of health and well-being data, as well as create a national metadata model that various organizations can use in the future for describing their data.
The third project is the national authorisation, information and support service project headed by the National Archives of Finland. This project aims to create a digital one-stop permit service, and an information and support portal for the use of restricted access well-being and healthcare data.
All the pre-production projects are scheduled to end in the fall of 2017. The objective is that the service operator would be fully functional early in the year 2018.
