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  4. Coeliac disease, social media and health; rewriting the city landscape with health knowledge

Coeliac disease, social media and health; rewriting the city landscape with health knowledge

Principal Investigator: Sam Martin, PhD researcher

Institution: Centre of Interdisciplinary Methodologies, University of Warwick

Research classification: Management of coeliac disease

Project start & duration: Oct 2013 (36 months)

Grant awarded: PhD Fellowship

Once diagnosed with coeliac disease, some individuals can find management of the condition and strict adherence to the gluten-free diet to be quite challenging.

This project will use ‘Big Data’ mining techniques to reveal social media networks of people with coeliac disease, who are proactive in sharing information about managing the gluten-free diet and how to alleviate ongoing symptoms.

A comparative analysis will be carried out to explore how people diagnosed with coeliac disease use social media in the cities of London and New York to visualise knowledge creation, risk aversion and food seeking behavior of people diagnosed with coeliac disease.

An additional aim of the project is to find innovative ways to use the ‘Big Data’ as an interactive learning tool, that may help both diagnosed and newly diagnosed people with coeliac disease.

Research from 2012 found that while there were many avenues for people to seek knowledge and support for managing chronic illness, there were very few places where people with a long term condition could have the opportunity to tell their story and visualise their experience.

Today there are many smartphone photo apps like Instagram, where users can add filters to images before posting them on social media but there is a lack of image based apps with the option to share photos in relation to long term conditions or special diets, such as the gluten-free diet for coeliac disease.

To help fill the void, this project will include development of a pilot smartphone app to further explore how visual apps may help people with coeliac disease. Individuals will be able to use themed stickers and filters to tag photos of food and daily experiences. The images of the experience of living with a long term condition can then be communicated via social media.

It is hoped that the information gained from this project will provide a better understanding  of how people with coeliac disease use social media and other technologies to self manage, learn and share knowledge about their condition. Also how this can be used to develop enhanced tools for self management.

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