I was in London this week attending the Innovation & Strategies for Digital Interventions in Mental Health conference that was organised by Dr Becky Inkster. The focus of the conference was to explore and be critical of how we engage with the digital to support mental health.
My research does not specifically focus on mental health (although research has demonstrated that those with Inflammatory Bowel Disease are more likely to suffer with mental health issues such as anxiety and depression – Graff et al., 2009), it does focus on digital interventions. The conference provided an opportunity to discuss what digital interventions might come to mean in the healthcare context and so hence my participation.
I would like to share some highlights that stuck out for me.
Hashtag Our Stories
Since all the positive work I have done with Phonar Nation, this company’s work really stuck out for me. Sumaiya Omar and her husband help enable people to use social media to amplify their story with the world. She says “communication increases empathy, isolation silences it.”
She shared one of the videos captured by one of the residents in the Grenfell Tower fire as an exemplar of how social media is democratising the publication of storytelling. No longer do we need someone (a journalist, perhaps) to have our story heard by a large audience. Sumaiya also said “it’s less about the views and more about having an outlet,” for people to share their stories. I am a firm believer in thinking globally and acting locally so I do agree with this, but nevertheless it is easy to feel discouraged with low views and not having a sense of purpose or impact.
There are still hierarchies within social media (blue ticks, for instance certifies somone with some level of significance); however, like Phonar Nation, should a group of individuals begin to use the same hashtags they connect their networks together and help amplify each other’s voice.
Data Shadow Donation
Data Shadow Donation “is an empirical research study that uses qualitative methods to explore the phenomenon of data shadow donation as a new form of civic engagement and political action triggered through the awareness that data is not merely a commodity or a tool for surveillance but is also a metaphor for power,” (Sleigh, 2017).
Her research provides a positive angle to surveillance whereby individuals provide their data with their full consent to help support research. What it raised was concerns around ethics: in the face of transparant surveillance, some participants were reluctant at first to donate their data. Also what was interesting is that since the data is anonymised her recruitment was done through social media, finding people who publicly announced their donation.
On the first day, Nikita Gill shared her story as a trauma survivor, finding poetry as her outlet to tell her story and support others.
— Kate Green (@KateGreen28) 31 July 2017
I would highly recommend anyone to look at her Tumblr. Like with Hashtag Our Stories, Nikita has positively used social media to share her stories and help empower others to do so as well. This helps raise awareness and helps to put a stop to the stigmatisation of mental health.
Of course, I have concerns with surveillance capitalism and the exploitation of those with mental health issues becoming subject to their own digital footprints in some way or another.
There was also a lot more at the conference that focused more specifically on mental health. It was super informative and has reminded me of the positive impact of digital technologies.
Graff, L. A., Walker, J. R., & Bernstein, C. N. (2009). Depression and Anxiety in Inflammatory Bowel Disease : A Review of Comorbidity and Management, 15(7), 1105–1118. https://doi.org/10.1002/ibd.20873
Sleigh, J. Data Shadow Donation. Available online: http://donatingdatashadows.com/about-this.