RESUMO
There are many barriers to data access and data sharing, especially in the domain of computational research using health care data. Legal constraints, such as HIPAA, protect patient privacy but slow access to data and limit reproducibility. We provide a description of an end-to-end system called Kung Faux Pandas for easily generating de-identified or synthetic data which is statistically similar to real data but lacks sensitive information. This system focuses on data synthesis and de-identification narrowed to a specific research question to allow for self-service data access without the complexities required to generate an entire population of data that is not needed for a given research project. Kung Faux Pandas is an open source publicly availableb system that lowers barriers to HIPAA- and GDPR-compliant data sharing for enabling reproducibility and other purposes.
RESUMO
BACKGROUND: Hospitalisation rates for inflammatory bowel disease (IBD) vary across the world. We aimed to investigate temporal patterns of hospitalisation for IBD in member countries of the Organisation for Economic Co-operation and Development (OECD). METHODS: From the OECD database, we assessed IBD-related hospitalisation rates (expressed as annual rates per 100â000 inhabitants) for 34 countries from 1990 to 2016. We calculated mean hospitalisation rates for the period 2010-15 and used joinpoint regression models to calculate average annual percentage changes with 95% CIs. FINDINGS: Mean hospitalisation rates for IBD from 2010 to 2015 were highest in North America (eg, 33·9 per 100â000 in the USA), Europe (eg, 72·9 per 100â000 in Austria), and Oceania (eg, 31·5 per 100â000 in Australia). Hospitalisation rates for IBD were stabilising or decreasing over time in many countries in these regions but increasing in others. Countries in Asia and Latin America and the Caribbean had the lowest IBD-related hospitalisation rates but the greatest increases in rates over time. For example, Turkey had an annual hospitalisation rate of 10·8 per 100â000 inhabitants and an average annual percentage change of 10·4% (95% CI 5·2-15·9). Similarly, Chile had an annual hospitalisation rate of 9·0 per 100â000 inhabitants and an average annual percentage change of 5·9% (4·9-7·0). INTERPRETATION: Hospitalisation rates for IBD are high in western countries but are typically stabilising or decreasing, whereas rates in many newly industrialised countries are rapidly increasing, which reflects the known increase in IBD prevalence in these countries. Potential explanations for these trends include changes in the epidemiology of IBD, health-care delivery, and infrastructure in these countries, as well as overall country-specific patterns in hospitalisations and differences between countries in data collection methods. FUNDING: None.