ISAACUS PRE-PRODUCTION PROJECTS
We are preparing a one-stop-shop operator that collects and co-ordinates well-being data for further use. Parts of the future operator are built in pre-production projects. #isaacus
WHAT IS IT ABOUT?
Sitra is preparing a new, one-stop-shop operator that will collect and co-ordinate well-being data on the Finnish population for use in areas such as research. The working title of this operator is Isaacus – the Digital Health HUB.
Together with our partners, we have launched several pre-production projects, which are building parts of the future digital health hub and the permit services.
The experiences from these projects will be collected and integrated into a plan of action for the operator to enable the launch of its operation in 2018.
What do we do?
There are several ongoing projects.
A project steered by the National Institute for Health and Welfare (THL) is developing a solution for solution for creating and managing common metadata descriptions. The descriptions created will be integrated into a public web service where they can be used by researchers, for example. Statistics Finland and the Finnish Social Science Data Archive are key co-operative partners in the project.
The projects by the Hospital District of the City of Kuopio, the Hospital District of Helsinki and Uusimaa (HUS) and the Hospital District of Southwest Finland are collecting well-being data that has previously been dispersed into separate places in operational systems. The data lake solutions created in these projects enable the faster and more comprehensive use of data than before.
In addition, a project by the Hospital District of Southwest Finland is piloting the refinement of data collected from the data lake and creating views for different types of users at hospitals.
A project by the City of Kuopio is piloting the use of data collected from the data lake. The aim is to predict the optimal service process for the youth work, the family social work and the home service for the elderly.
A data-secure environment for the use of well-being data is being designed in a project carried out by Statistics Finland, THL, the Biobanking and Biomolecular Resources Research Infrastructure (BBMRI.fi) and the Institute for Molecular Medicine Finland (FIMM). The project is also creating ready-made material for expediting the research process.
A project led by BBMRI.fi is creating a common process and tools for all biobanks for the formulation of research data. The pilot combines digitised samples collected by the biobanks from breast cancer patients and the data related to the samples, and information from pharmaceutical reimbursement statistics and the Finnish Cancer Registry with clinical treatment information.
A project led by the National Archives of Finland (link in Finnish) is creating a Finnish permit service operating on a one-stop-shop basis, in which researchers can apply for authorisation to use the data and material in the social welfare and healthcare register. The permit service will also pilot the search functionality of ethical evaluations. In addition, the project is implementing an information and support portal that will offer information about the access limitations of social welfare materials, the prerequisites for using data and the various intended uses of the data.
The work involves extensive co-operation. The participants include The National Institute for Health and Welfare (THL), Statistics Finland, CSC – IT Centre for Science, the National Archives of Finland, the Hospital District of Helsinki and Uusimaa (HUS), the Hospital District of Southwest Finland and the City of Kuopio.
Where are we now?
The first projects were launched in summer 2016 and all of them will finish by the end of 2017.
What have we achieved?
Data lakes were built in three projects
HUS data lake
A cloud-based, open-source code data lake was implemented and different patient data systems were integrated into it in the project. Additionally, metadata was collected on the transferred data. The project provided HUS (Hospital district of Helsinki) with know-how on the technologies used and an understanding of how this know-how can be used in clinical research and biobank research. The technical documents and the source code of the data lake have been published online.
Kuopio data lake
The project implemented a data lake into which some of the social welfare and healthcare data systems of the City of Kuopio were integrated. In addition to the data, several tools for analysing and visualising data in what is known as the researcher’s workspace are available in the data lake. The project used the data to examine the functioning of the social services care paths and conducted a text analysis on the written narratives of social services.
The City of Kuopio has transferred the maintenance and further development of the data lake to Kuopio University Hospital. Relevant parts of the solutions developed in the HUS data lake project were used in the project. The technical documents and the source code of the data lake have been published online.
VSSHP data lake
A regional data lake for the needs of the Hospital District of Southwest Finland (VSSHP) was implemented in the project and tested in different use cases. The project has provided a large amount of new expertise in data lake technologies, data quality and data management for the secondary use of well-being data. The technical documents and the source code of the data lake have been published online.
Evaluation of the data lake solutions
Aalto University evaluated the data lake solutions of the Helsinki Uusimaa Hospital District (HUS) and the Hospital District of Southwest Finland (VSSHP).
Read more: Evaluation of the Isaacus project’s data lake solutions in research use
Desktop views for different users
VSSHP 360 views
In the project, the clinical data service capabilities of VSSHP (Hospital District of Southwest Finland) were developed in the areas of visual analytics and data analysis. As a result, a document that will benefit organisations implementing a corresponding operating model elsewhere in Finland was also created. The technical documents and the source code have been published online.