Research using registry data can contribute to improvement of health and healthcare

Research using registry data can contribute a great deal to the improvement of health and healthcare. Sweden is uniquely positioned in this respect, but the resources remain under-exploited, and there are methodological and financing problems that need resolving.

Extensive databases in the form of population, patient and quality registries in healthcare have become goldmines for research in Sweden; however, mining the gold takes knowledge, method, money and, not least, money.

"The complexity of registry-based research shouldn't be underestimated," says conference-arranger Professor Jesper Lagergren of Karolinska Institutet's Unit of Upper Gastrointestinal Research, who conducts his own registry-based research. "People who aren't used to working with registry data think, rather naively, that all you have to do is add together two registers and you get new research results. But it takes knowledge of the registries and of every single variable to be used, as well as considerable epidemiological and biostatistical acumen."

The conference is divided into three parts. The first part addresses the possibilities and limitations of this kind of research, while the second deals with current and future financing issues. Several major financiers and government representatives will be taking part in the discussion.

"There's an unfortunate tendency for people to think that registry-based research is simple and free, but it's a laborious, time-consuming process to do research on registry data at a high scientific level."

The third and closing part of the conference looks at the enormous health gains that can be made through registry-based research, a field in which Sweden is very much the world leader.

"It surprises our overseas colleagues that we don't make more use of our registries. Sweden is unique in having such complete and detailed registries stretching far back into the past."

Reporters are invited to attend the conference "Registry-based research in Sweden - past, present and future". Time and venue: Thursday 25 April at 2013, 9.00 am - 5.00 pm, Eugeniahemmet, Karolinska University Hospital Solna, Stockholm, Sweden.