Combining patient register data to real world evidence supports quality of life

Finland has a long history in the maintenance of personal registers that have proven to be reliable. This has put us on the front line of utilising register data in scientific research. At their best, studies based on register data promote high-quality and safe treatment, and help provide as good quality of life as possible even to severely ill patients.

What is a register study?

A register study is a scientific research study in which the material is partly or totally based on different registers, such as social and health care registers. In Finland, registers are maintained by different authorities, such as Kela (the Social Insurance Institution) and THL (the National institute for Health and Welfare). Patient surveys also provide valuable information for scientific research, and this data can be combined with data from official registers.

Register studies are ethical and data protected

High-quality scientific research often requires combined data from different registers. In this case, the data are combined by using personal identity codes. The register controller of one of the registers participating in the study, such as the National Institute for Health and Welfare, is responsible for combining the data. The data combiner creates a study-specific identification number for the personal data, and this identification number then replaces the personal identity code. When the data have been combined, the personal identity code is no longer needed, and is removed. If necessary, the register data is coarsened in such a way that not even indirect recognition of a study subject is possible.

Register studies shall always be conducted ethically, maintaining data protection. Permission to utilise register data is always required from the register controller and/or from the patient. In most cases, a separate ethical permission must be sought for the study.

New cancer study paves the way for register studies

A national cancer study was launched this spring as a joint research project by Oriola, the National Institute for Health and Welfare and the Association of Cancer Patients in Finland. The research project is a good example of a novel way of utilising national register data and Real World Evidence (RWE), data on the treatment of patients and their quality of life, collected by research pharmacies and patient organisations. The objective of the study is to control the increase of medicinal treatment costs, while at the same time ensuring that patients receive effective treatment that supports their quality of life.