Finland’s comprehensive sets of health information, uniform genetic heritage, top-notch research and excellent technology are a combination that few countries can offer to health care researchers and decision-makers. However, the health information has not been utilised effectively due to dispersed data sources and legislation that is lagging behind.
The need to utilise information has increased in recent times, as information is needed to support decision-making, for example in the preparation for the social and health care reform that is yet to be implemented. The research and development activity based on Finnish health information might even become the next Nokia – a venture that would increase our level of expertise and increase exports which would benefit Finland’s economy.
Availability of health information is being improved by technical solutions and new legislation
Recently, hospitals and hospital districts have developed their IT systems and established so-called data lakes in which data is stored in an easily accessible and combinable form. A prime example of this are biobanks. In addition, several authorities that maintain registers (such as the National Institute for Health and Welfare and The Social Insurance Institution of Finland) have launched projects for developing their public online services.
However, the data in the data lakes has been mostly used by the units themselves for development purposes, and data stored in the authorities’ registers has only been available on a fairly general level. Strict and varying permit policies have hampered third party researchers’ access to the data. Data requests may have become stuck in ethical boards that convene only rarely and the risk of rejection has been high as well.
To clear these obstacles, a new act on the secondary use of social and health care data was passed in March. Pursuant to the act, a new data permit authority will be established in Finland with the task of processing the data requests, granting permits and, if necessary, combining data from data held by several controllers. When a permit application has been approved, the data will be delivered to the applicant by a set deadline.
Regulations and technology will enable new business – without compromising data security
It will also become easier to obtain data to support business operations, provided that certain criteria are met. It will be possible to grant more detailed data for scientific research. The data disclosed to development and innovation operations will always be aggregated, i.e. assembled from several individual pieces of data, resulting in a data set from which an individual person cannot be identified in any way. Particular attention has been paid to data security. Sensitive data sets will be delivered into a secure hosting service administered or certified by the data permit authority.
In practice, health information can be used for developing new, personalised pharmacotherapies, assessing the impact of current therapies and developing new products and services in health care technology.
Therefore, both technological and legislative tools will soon be available for the utilisation of health care data. The Pharmaceutical Information Centre has played a key role in this development. Our network is extensive, and thanks to the new legislation, we are able to utilise the sources it offers to support our services for knowledge-based management and Real World Data. A new Nokia is about to emerge!
Text by: Petter Tuderman, Development Pharmacist