Statistical data for scientific health studies

As part of LIFE-MEDHISS project meeting held at CREAL, there was a presentation by Anna García-Altés, from the Catalan Agency for Quality and Evaluation of Health (AQuAS), describing the VISC+ project, an initiative from the Catalan Government to use all the available health information anonymously for research purposes.

“The key aspects of the reuse of information is based on the quality and variety of the available information, the measures of information security and data protection”, explained García-Altés.

How to access to health information for research purposes?

We need to know where the source of data for each study is and be authorized  to use them. Through VISC +, Aquas can access different data sources and provide research centers in anonymously way with safety protocols and data protection. Citizens may request that their data are not used for biomedical research through VISC + projects.

How to use the data?

If someone needs information for scientific studies, we can make us some questions like: what if we need to link different datasets? Are these data available in an administrative record?

The Catalan Institute of Health (ICS), the Catalan Health Service (SCS) and the Department of Health authorize AQuAS to give permission to research centres to use this information, in an anonymously way.

There are several databases available as sociodemocratic data, drug registries, invoices, medical images, mortality register (cause of death), CMB-D-AP and eCAP (visits, lifestyle, vaccinations,…), etc.

For example, in a study of effectiveness of dual antiplatelet therapy in patients with myocardial infarction you can use the registry of heart attacks and recording prescriptions. Another example: to study the changes in the metabolic control of type 2 diabetes, you can use data eCAP, registration of hospital admissions, registration of prescriptions and mortality registry.

A study led by CREAL about air pollution and autism spectrum disorders (ASD) in children is using VISC + to find controls for study (children without ASD born the same day and in the same place that children with ASD).

The health survey is a statistical registry and it can only be used for the research in and anonimized way.  “Statistical data are more protected than any personal data. The use of this data is for free, only you need to be used for Catalan public research, not to be sold for private companies. There is not similar iniciative in the rest of Spain. We are unique”, explained the speaker.

Other sources of information such as the Health Survey of Catalonia left out of VISC+ because they are subject to statistical confidentiality and therefore can not cross the information with other records using personal data. "Statistical data are more protected than personal data". Using data VISC + is free, but is only accessible to Catalan public research centers. This information is not available for private companies. "There is not similar VISC+ initiative in the rest of Spain. We are unique," concluded the speaker.