Online sharing
in extreme
circumstances

“The project is about the role of trust and empathy in sharing information online by people who are in extreme circumstances”, says Professor Peter Bath, Head of the Information School and primary investigator on the A Shared Space and A Space for Sharing project.

 

“It is about how those three work together: trust, empathy and sharing information.” Having started in June 2014 and due to end this year, this £1.2million project involves six UK Universities, each looking at a different group of people in difficult situations from the background perspectives of different disciplines including philosophy, computer science, sociology and, of course, information science, the interdisciplinary approach giving a wide-ranging understanding of the issues around online sharing.

At the Information School in Sheffield, the lead University on the project, research focusses on people who are suffering from life-threatening or terminal illnesses. The research in Sheffield, conducted by Professor Bath along with research associate Sarah Hargreaves and former student Suzanne Duffin, is run in collaboration with UK charities Breast Cancer Care and the Motor Neurone Disease Association.

Data from the online forums for these charities and semi-structured interviews with forum users and moderators were analysed and formed the basis of the research. Using thematic analysis, commonalities in what was posted and discussed were pulled out to give a broad picture of how these online communities are used. “We looked at how people develop trust with other people who have the same condition as them, what kinds of information they share, how they share it and how trust develops over time”, says Professor Bath. “More recently we’ve been looking at the role of empathy and how people empathise with each other in those online spaces. We looked at how people can get something from each other that they can’t get from healthcare professionals: a lived experience and understanding of what they have to go through.”

The various project partners are
examining online sharing in
different extreme circumstances.

University of Sheffield: Terminal Illnesses

People living with life-threatening conditions and how they use online health forums to share information and build relationships.

University of Edinburgh: Self Harm

People in emotional distress and considering self harm or suicide and how the Samaritans’ online services work.

University of Lincoln: Illicit Drug Use

People using online forums to share practices on the use of illegal drugs and their behaviour, including the criminalisation of previously ‘legal highs.’

University of Nottingham: Humanitarian Crises

People suffering during the 2014 floods in the Balkans and how communities, split by the civil war 20 years previously, came together.

University of Warwick: Organ Donation Requests

People posting personal blogs online requiring organs or tissue by sharing their stories and the ethical issues surrounding this.

Kings College London: Twitter Data

The Kings College team analysed Twitter data for both the Nottingham and Edinburgh projects, with reference to specific examples like the reaction to Robin Williams’ suicide, and the Ukranian civil war.

One paper published on the study has found that ‘Trust is a process that changes over time and which is influenced by structural features of the forum, as well as informal but collectively understood relational interactions among forum users.’ The Sheffield team are working on more research with the Warwick team on ethical issues around online moderation. “What we’re trying to do now, in the final stages of the project, is extract from those different work packages a common understanding of how people in extreme circumstances share information online”, says Professor Bath of drawing together the work from the various project partners.

As the Space for Sharing project is one of five projects funded as part of the EMoTICON research programme, cross-council funding has come from the Economic and Social Research Council (ESRC), the Arts & Humanities Research Council (AHRC) and the Engineering and Physical Sciences Research Council (EPSRC), as well as the Defence Science and Technology Laboratory (the research branch of the Ministry of Defence) and the Centre for the Protection of National Infrastructure.

The motivation for the research having come from the funders directly, 300 applicants answered a call for participation in a ‘Sand-pit’ and only 25 were selected to be “locked away in a hotel in Cheshire for a week” to discuss ideas and present fully costed project pitches by the end of the week. The Space for Sharing project was the largest successful bid both in cost and number of partners.

It is easy for those
suffering terminal illnesses
to feel alone and on the edge
of society, suffering their
illnesses in solitude.

Understanding the means available to us
that can bring people together digitally
is crucial for the wellbeing of patients.

The project has piqued the interest of a large number of parties and findings have been presented at events such as the Motor Neurone Disease Association Conference and various Sheffield community events. In addition, a play has been written and performed by local theatre company Dead Earnest Theatre based on the research and the issues it brings up. The play is based around five women with breast cancer who communicate with each other using the Breast Cancer Care forum, following the development of their characters and their relationships as they go through the stages of treatment and living with the condition. “It’s very true to the findings from the research”, Professor Bath says. “I’m so glad we did it because what has come out of it is so powerful, and it tells the story of how we found people interacting with each other online incredibly well.” With further performances in the planning for Breast Cancer Care, NHS staff and Cavendish Care, Professor Bath and director Charlie Barnes hope to develop the already changing script to incorporate more of the complex issues around living with breast cancer. The reactions and evaluations the play receives seem to indicate that people are thinking and engaging with these issues and, appropriately, sharing more with each other, particularly during the audience discussion that follows each performance.

“At one performance, a woman stood up and said that she and the woman sat beside her had met on the online forum and were now close friends”, explains Professor Bath. “At another performance, someone who had suffered breast cancer many years ago expressed her wish that something like the forum had existed at the time. It’s not just about entertainment; it’s about the discussion of the emotive issues.”

“From the very beginning, I could imagine a photographic exhibition in the Winter Gardens, so it was great to see that come to fruition”, says Professor Bath of another engagement project undertaken with local photographer Anton Want. Twelve large photographs depicting people from each of the six project arms were put together with quotes from research. For some of the sensitive research areas, actors were used in the large photos, but some of the research is represented by real people in these situations who were interviewed in the study. As well as being shown in Sheffield’s Winter Gardens, the exhibition travelled to London, Lincoln and Nottingham, always receiving lots of interest and praise.

It is easy for those suffering terminal illnesses to feel alone and on the edge of society, suffering their illnesses in solitude. Understanding the means available to us that can bring people together digitally to mitigate this is crucial for the wellbeing of patients, and with the positive engagement that A Shared Space and A Space for Sharing is still gathering, Sheffield is at the forefront of these discoveries.