SOCIAM is a EPSRC-funded programme involving a large team of people from 3 universities – Southampton, Edinburgh, Oxford – which set out to explore how existing and emerging social media, along with crowdsourcing platforms like Zooniverse, are changing the relationship between people and computers. It involved studies cataloguing social media, analysing online ’sociality’, mapping the topographies of social activity on different platforms, analysing how privacy is managed in online spaces, and undertaking empirical research on applied topics, of which health was a key example.
A recent paper, “The social dynamics of lung cancer talk on Twitter, Facebook and macmillan.org.uk” was published in Nature, Digital Medicine and examined lung cancer narratives on three platforms to explore differences in the types of information or emotions shared on each one. Data analysis indicated that Twitter is significantly better than Facebook for companionship support, “reflecting the use of hashtags as user-generated signals of community belonging and interests”.
“#Deathbedlive : the end of life trajectory reflected in a patient’s tweets” is a study which aimed to explore how people with cancer interact on social media, and what this can tell us about the value of these platforms for understanding patients’ lived experiences. This work was conducted by Dr Claudia Pagliari in collaboration with PhD student Joanna Taylor, whose thesis focuses on social media in the context of long term health conditions.
The above histogram, or annotated timeline, comes from a study that set out to explore whether cancer end-of-life trajectories reported in the medical literature can also be seen in social media postings. The study analysed the tweets of Dr Kate Granger, best known for the “HelloMyNameIs” campaign, in the final months of her life, with the consent of her widower. We were able to discern the expected physical and psychosocial trajectories in the pattern of tweets, to qualitatively explore Kate’s experiences at different stages of diagnosis, treatment and palliative care and to understand the types of social support offered by her followers.
We are currently collaborating with cancer specialists to extend this work to other conditions and data science methods.
These studies are linked to SOCIAM, but also form part of Claudia Pagliari’s research theme on Social Machines, Social Media and Health.
