New digital platform brings the principles of fair data usage to medical treatment research
The digital research platform is used in Oriola’s real-world evidence (RWE) studies, which combine national register data and patient-reported outcomes from medical treatment. RWE studies help to develop quality of treatment and improve opportunities to get new medical treatments for Finnish patients.
The research platform increases transparency of health data usage for the patient in real world evidence studies, which investigate effectiveness of medical treatment.
The research platform developed by Oriola is based on strong identification and secure data handling. The research platform uses pseudonymisation, which means that patient’s personal data is encrypted after identification and researchers handling the research data are not able to connect responses to an individual. In the platform, examinees can at any stage change their consent to use their data in research or give their consent to a new study.
The digital research platform was first taken in use in May 2020 in national cancer study, which is a joint project of Oriola, the Finnish National Institute for Health and Welfare and the Association of Cancer Patients in Finland.
“Utilisation of health data enables more preventive and targeted healthcare. In our IHAN project, we are creating a model for a European data economy, which provides a framework for digital services to utilise data with individual’s consent, with trust. It is great to see that the outputs from the pilots of the project are being taken in a wider use,” says Ilkka Räsänen, Leading Specialist from Sitra.
The development of Oriola’s research platform was one of Sitra’s IHAN pilot projects. The pilot projects implement experiments promoting a fair data economy. The aim is to build services making people’s everyday lives easier based on sharing data with their consent.
Read the press release by Oriola. (9 June 2020)