The Centre for Health Data started up on 1 October, and will initially focus on maintaining a secure, coordinated process for the release of health data to researchers. This use of data is intended to lead to an improvement in prevention, diagnosis and treatment. The Centre for Health Data shall also work towards greater equality in healthcare. The Centre is headed up by Jan Andersson, Research Director at Region Stockholm.
Assisting both healthcare providers and researchers
The Centre for Health Data is a new collaborative organisation within Region Stockholm dedicated to providing a hub for researchers who require access to health data. The department will perform a service role for those who are entitled to gain access to health data for research and development purposes, as well as the healthcare providers who own such data. The Centre for Health Data assists researchers with ethical approval and research plans by ensuring they don’t have to refer to multiple healthcare providers in order to gain access to health data. The centre assists healthcare providers by offering a one-stop-shop with professional, coordinated assessment of the type of data to be shared, and how this shall be carried out in accordance with applicable legislation. This means, for example, that the formation of the Centre for Health Data does not lead to any change in the type of data which may be shared.
No internal database
The Centre for Health Data will not have its own database, rather, it will coordinate the release of data for purposes permitted under applicable confidentiality and data legislation. An extensive confidentiality examination will take place before each release of data. Among other things, this examination includes assessment of the recipient’s ability to guarantee confidentiality and security in relation to the data to which it gains access.
To apply for data sharing you must be actively engaged in research at a university or higher education institution, or within healthcare.
In addition to the form above, you must send the following:
- Project/Research plan
- Specification of variables from each register
- Complete application to the Swedish Ethical Review Authority, including approval
- Information that has been sent to research subjects
- A sample of the research subjects’ consent documents
- Data Processing Agreement, in cases where you have a (Personal Data) Processor who gains access to data
Completed applications are to be emailed to firstname.lastname@example.org