The World Diabetes Distress Study (WDDS) is a worldwide study in people with type 1 and type 2 diabetes. This project aims to use data generated by people with diabetes on Twitter and Artificial Intelligence (AI) methods to study complex relationships between lifestyle, diabetic distress, key biological parameters in disease monitoring and complications related to diabetes.
Twitter can be considered as an open digital space with flat role hierarchy for information sharing and development of online communities. In particular, there is a strong and active diabetes online community that frequently shares their feelings, daily struggles or anxieties about their disease.
• To collect diabetes-related Tweets all over the world to create a unique resource to work on the topics of interest of people with diabetes and what matters to them. Since 2017, 4 millions of diabetes-related Tweets were collected per year in English, French, Spanish and German.
• To identify all over the world, diabetes distress patterns, topics of interest of people with diabetes and their related emotions. Socioeconomic and environmental determinants of diabetes distress were also studied based on Tweets’ geolocation data.
This project is an Open Source initiative, which means that all the algorithms, methodology and publications are and will be made available to all.
The use of social media for epidemiological purposes originated early 2010 on platforms such as Twitter and was mostly driven by research questions on public health issues like infectious diseases, vaccination, obesity, or smoking, followed by behavioral research and psychiatry. With now almost 700 publications per year using Twitter indexed in Pubmed, a large number of publications for health research emerged based on social media data.
"Our ambition is to use this resource for a better understanding of the daily life of people living with a chronic disease and how this type of data can be integrated into modern epidemiological research in combination with other sources of information and to complement what can be achieved in typical settings. We also work on the ethical challenges related to the use of such data".
The WDDS project is funded by:
•French Speaking Diabetes Society,
• Étude mondiale de la détresse liée au diabète : le potentiel du réseau social Twitter pour la recherche médicale.
Fagherazzi G, Ahne A, Guillot C, Riveline JP, Bonnet F, Mebarki A, Schucke S, Czernichow T, Jeannerod G, Orchard F.
Revue d'Épidémiologie et de Santé Publique Volume 66, Supplement 4, June 2018, Pages S197-S19