Legislative work is under way with the aim of opening a ‘one-stop’ service for researchers and developers in late 2018, without compromising data security. Here, Hannu Hämäläinen, Ministerial Adviser, Ministry of Social Affairs and Health, explains more about the forthcoming changes.
Finland has unique healthcare registers. Information on individuals, along with their personal identity codes has been stored in databases since the 1970s. However, this data has been buried deep in these registers making it difficult for those developing treatments and medications to access.
Getting permission for research can take as long as two to four years and in some cases permission has been denied.
Legislation on the secondary use of social and health data has focused on allowing its use for scientific and statistical purposes. So far, health data that has been rendered anonymous has been made available only for scientific research, and scientific methods have been used for its study.
However, the world has changed. Research and development, work and data management require faster practices than before and a broader combination of data from different sources.
New practices will be in place this year, Legislative work is under way and a new service is expected to begin operating in late 2018.
In addition to research, the data will be open for more extensive use than is currently the case, in areas such as education, management and official planning work.
A unique ecosystem will be available for international research and will extend corporate co-operation without compromising data security.
This is the second part in Sitra’s series of videos and blogs for Precision Medicine Forum. The first, by Sitra’s Project Director, Digital Health Hub, Jaana Sinipuro can be viewed here.
Jaana Sinipuro will be speaking at the Nordic Precision Medicine Forum in April 2018. You can register for the event here and take advantage of a 30% ‘early bird’ discount.