Finland offers an ideal environment for the pharmaceutical industry’s Real-World Evidence (RWE) studies. Legislation’s clear guidelines ensure that healthcare data can be combined from various registers. Finnish hospital data lakes provide access to nearly all patient information collected in hospital databases.
Pharmaceutical companies should consider Finland when evaluating locations for Real-World Evidence (RWE) studies. The country boasts numerous strengths that make it an outstanding choice for real-world data-based (RWD) research.
“Finland’s strong tradition and extensive experience in utilizing healthcare registries for research make it unique,” says Dr. Riikka Mattila, Scientific Advisor at Medaffcon.
Finland implemented The Act on the Secondary Use of Health and Social Data in 2019. This Act enables using social and healthcare data for research purposes and sets guidelines for using social and healthcare registers.
The 2019 Act was the first of its kind in Europe and serves as a benchmark for the European Commission’s upcoming European Health Data Space (EHDS) legislation.
The European Health Data Space (EHDS) legislation’s aim is to facilitate the utilization of health data across the European Union (EU) and the integration of datasets on an EU-wide scale. Dr. Riikka Mattila, Scientific Advisor at Medaffcon has contributed her expertise in Finnish Sitra‘s (Future Fund) European Health Data Space (EHDS) project.
Dr. Mattila notes that international clients are often impressed with the ability to link data between all Finnish health and social registries with the Finnish personal identity code, which was introduced in Finland in the 1960s.
A code issued to a person who is registered in Finland’s Population Information System is used to identify persons in the registers and information systems of different authorities and in data communications between them.
“These codes are a tremendous asset for research. They enable the integration of data from multiple registers, including electronic health records and reimbursement registers, which can be linked to other information such as occupation, education, and socioeconomic status,” explains Dr. Riikka Mattila, Scientific Advisor at Medaffcon.
These codes also facilitate including relatives’ information.
“For instance, a mother´s health records during a pregnancy can be linked to the baby’s health records. It is also possible to study siblings or include them as controls,” adds Dr. Mattila.
Finnish data are comprehensive: Nearly all specialized healthcare data in Finland are digitally available. Some may question whether the data from Finland’s population of 5.6 million can meet the pharmaceutical industry’s needs. Nevertheless, Finland often provides more extensive research data than larger European countries, even for rare diseases.
“Researchers have access to diverse information, ranging from the level of detailed clinical data, such as hospital medications and pathological findings, to extensive national registers,” states Dr. Riikka Mattila, Scientific Advisor at Medaffcon.
Most data are available on an opt-out basis; they can be utilized unless a patient explicitly denies consent.
“Only a very small percentage of patients opt out of the use of their data for research,” adds Dr. Mattila.
A significant benefit for pharmaceutical companies is that processing time for digital real-world data (RWD) is typically considerably faster than manual extraction.
Finnish hospital data lakes are rich in information. Data lakes contain data from publicly funded specialized healthcare organizations. It ensures a broader patient population compared to insurance-based healthcare systems.
Data lakes offer researchers access to almost all data collected in hospital IT systems, including genetic test results, information on hospital medications, prescriptions, pathology results, radiology results and images, as well as monitoring data from intensive care. Information from hospital data lakes can be linked to biobank samples.
Researchers can obtain real-world data (RWD) from hospital data lakes for research purposes within a few months’ time between requesting data and receiving it.
Finnish clinicians generally have a positive view of using healthcare data in pharmaceutical research.
“They gain valuable insights into their patients and treatment outcomes,” concludes Dr. Riikka Mattila, Scientific Advisor at Medaffcon.
The lymphoma research project has proven to be an exceptionally versatile source of new knowledge. The project includes at least two doctoral researchers, and its results are expected to generate well over ten scientific articles.
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Scientific Advisor
PhD
Riikka joined Medaffcon in February 2021. She has a wide-ranging experience from different therapy areas from atherosclerosis and birth asphyxia to neurodegeneration. She has more than 15 years of experience in research, three of which in Max Planck Institute in Germany. Her PhD thesis from 2011 focused on cholesterol metabolism.
Riikka’s strenghts include broad know-how and interest in diverse therapy areas, as well as enthusiasm and experience in both written and verbal scientific communication. At Medaffcon she enjoys varied projects and effectiveness of research.
Real world evidence fascinates Riikka because there is so much data, and more accumulating all the time, and most of this data is unused. There is potential for findings to support clinicians and the pharmaceutical industry, as well as alleviate the lives of patients. She is also happy that decisions in health care are increasingly evidence based.