Dataguiden – new support for researchers using register and health data

Where can data be found, and how does the application process work? Which laws and regulations apply, and where is support and assistance available? Using registrer and health data in research often involves complex processes, with many stakeholders and regulatory frameworks to navigate. The website offers consolidated information on how to locate, apply for and use data. The guidance is relevant across many fields, including epidemiology, social sciences and clinical research. It includes information on:

• different types of data sources and where to find them
• practical procedures for data access and permit applications
• relevant legislation and regulations
• resources from various support organisations
• planning data usage.

Dataguiden also features interviews with researchers and support staff who share their experiences. The information is structured according to the different stages of the research process.

“Sweden has excellent conditions for clinical research thanks to access to high-quality registry data and the ability to follow large patient groups over time,” says Jonas Oldgren, Secretary General for Clinical Research at the Swedish Research Council.

However, for researchers to truly utilise and combine data responsibly, support and guidance are needed to navigate laws, regulations and stakeholders.

“I hope Dataguiden will strengthen research and contribute to greater benefits for patients,” says Jonas Oldgren.

Henrik Ekengren Oscarsson, Secretary General for Humanities and Social Sciences sees great potential within his research field:

“Our population registers give Swedish research a major competitive advantage across all disciplines. But combining different data sources and handling sensitive personal data can be complicated. Dataguiden provides support in these areas and makes it easier to use our valuable data sources.”

Dataguiden replaces Registerforskning.se and offers updated and broader guidance – not only on registry data but also on health data from medical records and other systems. The website is part of the Swedish Research Council’s efforts to improve the conditions for conducting research using registry and health data in Sweden.

The website will be translated to english in a near future.

Visit Dataguiden website External link.