Editorial 3/2012

Providing Service to Health Sciences

Sami Borg

Health is well suited to be a theme for the FSD Bulletin even though health research is generally not regarded as a core subject of social sciences. There are many reasons for choosing this theme.

The first reason is that the boundaries between scientific disciplines are becoming increasingly blurred. Health promotion is also an important issue for society. Apart from clinical medical research and biomedicine, a significant part of health research uses similar methods and data as social sciences and cultural studies. In social and political context, health is one of the key fields and much of the data are collected through public funding. It is not unusual for people doing health research to have a background in social sciences or economics.

The second reason for choosing health as a theme is a consequence of the above. FSD collections already contain plenty of data covering health issues. We do not archive human samples and have few clinical datasets but we have a high number of health-related data collected through interviews and questionnaires.

Such data are mostly quantitative and often form part of survey series. The series study well-being in general, well-being at work, mental health, ageing, sports and exercise habits, alcohol use, substance abuse, or health and social services. FSD collections hold hundreds of such datasets. We are also making progress in obtaining qualitative health data.

The third reason for the choice of theme is that we are extending the scope of our archive to new fields in the FSD Upgrade project. It will take a while to make our services and operations fully functional for health data. Careful planning, co-operation with researchers of the field, and reviewing FSD goals and resources with funders is called for.

We believe we are aware of the major challenges. Researchers do not generally greet the idea of archiving and sharing data with joy, in any discipline. Copyright and ownership issues have to be settled. In case of health data, long-term preservation and reuse involves many confidentiality and consensus issues. Health research often covers sensitive subjects and requires permission from an ethical review board and consent from research participants. All these factors influence the reuse potential of data. Health data may consist partly or wholly of register data and they often include direct identifiers. Even when there is permission and consent for archiving, preparing the data for re-users requires a lot of work.

However, experiences from other European countries have shown that if data collection is carefully planned and conducted and data processing is done appropriately, reuse of health data is possible. The Nordic data archives are pooling their experiences, discussing the problems and best practices together. So the FSD is ready to face the challenge.

Sami Borg