From online social networks to codesign in digital health

From online social networks to codesign in digital health

I set this blog up just over four years ago in January 2012 both to record my online ethnographic PhD research and with the hope of having conversations that would help inform my thinking and enable me to share my learning along the way. After four years of working full time, compressing five days into four and doing research on the extra day I’d squeezed out of the week, I finally had my viva on Friday. I passed the assessors’ grilling with four minor corrections and am basking in a profound sense of relief and delight in equal measure. My research was about online social networks and mental health with a heavy focus on the now departed The World of Mentalists blog and ecosystem around it. I have many people to be grateful to for in helping me think about this topic over the last four years. In particular I’d like to thank all my interviewees for sharing their time and expertise (you know who you are) and to everyone who welcomed me into the madosphere. I’d also like to thank Phil, Mark, Sue, James and Kat for many a Skype, phone call, meet up and often conference podium where we shared our thinking about mental health and online social networks with various audiences. During those four years  my interests have developed beyond online social networks to digital technologies in health, with a particular focus on co-design and ethics. I’ve clocked up 133 posts on this blog and recently changed its title  to reflect those broader interests. A few years ago I set up mHabitat which comprises an ever...
Eight characteristics of sociable professionals & organisations

Eight characteristics of sociable professionals & organisations

What are the key characteristics of professionals and organisations who understand online social networks and participate in them in ways which are welcomed by their publics? My PhD thesis has sought to understand how relationships between people accessing and providing mental health services are being disrupted in online social networks. Whilst my ethnographic research focused on the sadly departed The World of Mentalists and its ecosystem of blogs fondly referred to as the madosphere, I am finishing my final chapter with some general insights about how professionals and organisations can be sociable in online spaces. Whilst my focus is on mental health, I think these insights have application beyond the mental health sphere. Below are my (very draft) eight characteristics of sociable professionals and eight characteristics of sociable organisations. I’d be massively grateful for your comments – please feel free to question, challenge and rip them to pieces! Eight characteristics of the sociable professional The sociable professional appreciates the affordances of online social networks for people to bolster their wellbeing through seeking information and producing their own content The sociable professional understands the benefits of peer support in online social networks to engender mental wellbeing, validation, resilience and self esteem The sociable professional facilitates digital inclusion to ensure people they support do not get left behind The sociable professional supports people in their blended offline and online lives where this is welcomed – navigating the perils and the possibilities The sociable professional respects and is an ally to people living with mental health difficulties who exploit online social networks to challenge stigma and discrimination The sociable professional mediates their...
Research project – technology and mental wellbeing

Research project – technology and mental wellbeing

I recently met Aislinn Bergin, a PhD student, at the King’s Fund Digital Congress and it was great to find out about her research. As I enter the final stages of writing up my thesis, it’s nice to be able to help out someone in the early stages of their PhD journey. Here is a bit more from Aislinn about her research: I have to admit that I wish I had thought of the words ‘people-driven’ when I first started my research. Instead I chose the much more difficult to explain concept of ‘autonomous’ – it’s also one of those terribly academic words that no one really knows the meaning of. Oh to go back in time! In fact the title of my research, “a constructive grounded theory study of the experiences of autonomous users of digital mental health” is quite a mouthful, so much so that I had to set up a website just to explain it! People-driven really does explain my research quite well though. I’m inviting people to tell me about their experiences of digital mental health, of using technology for their mental wellbeing. After spending the past 3 or 4 years digging deep into the world of digital mental health, looking at everything from computerised CBT to gaming apps for anxiety, I realised that there was something really significant going on. On the one hand you had all this research looking at the efficacy and acceptability of various digital tools and activities and on the other you had people using them. Lots of new stuff was being created, tested and rolled out with less than perfect results (few...
Social media & backstage performance – part I

Social media & backstage performance – part I

In his seminal sociological work The Presentation of Self in Everyday Life (1959) Erving Goffman employs a theatrical metaphor to shed light on everyday social interactions – we endeavour to manage the impression we give of ourselves to others through our front stage performance; our back stage performance is where we can set aside our public selves, step out of character, adjust our flaws and construct our public selves. We use any number of props to manage our front stage performance. In contemporary life, the press release is a typical institutional prop for impression management. However, online social networks are also props which enable the audience (AKA ordinary people) to question, challenge and even undermine those attempts at maintaining a coherent front stage – they demand that the curtains are pulled back and they demand access to the back stage area. But how often are institutions willing to give this sort of access? Last week saw a storm of protest on Twitter in response to a BBC News film in which the use of prosthetic masks to teach mental health nursing students was promoted. It is easy to see why the press release got picked up by mainstream media – it made a good front stage headline as can be seen in their press release: Hollywood silicone masks bring interactive nursing to life at RGU; the University got positive modest mainstream media coverage as a result. However, Twitter didn’t receive the story with quite the same uncritical enthusiasm. I won’t go into the detail here, but you can check out the Twitter hashtag #MHMasks to find out more. Firstly...

Is social media helping people talk about mental health?

This week the Guardian published an article #timetotalk: Is social media helping people talk about mental health? to coincide with Time to Talk Day run by the Time to Change campaign. #timetotalk asked us all to spend five minutes talking about mental health so we can break down stigma and increase understanding. Time to Change have really embraced social tools to spread their message, as in this short film promoting #timetotalk I was struck by the question posed by the Guardian, as it gets to the heart of one of the themes I have been considering in my PhD research over the last few years. It also caused me to reflect that back in 2011 when I began my research, I would never have imagined such a headline would make it into the mainstream media. It  is a reminder of how embedded online social networking has become in our day-to-day lives (at least for many of us) and evidence of the particular affordances of social media for people talking about difficult issues such as mental health. My online ethnographic research has primarily focused on a now defunct blog and the ecoystem of blogs that surrounded it. It’s another reminder of the fluid and impermanent nature of online social networks. During my fieldwork the conversation moved inexorably from the slower paced and asynchronous world of blogs (or madosphere as some called it at the time) towards the faster paced world of Twitter and real-time chats. What was once a space and set of practices that felt subversive and risky to many of its participants, is now increasingly bubble wrapped in professional...
Will 2015 be the year of open?

Will 2015 be the year of open?

Will 2015 be the year of open? For me, New Year marks the beginning of a countdown to completing my PhD research which I hope to finalise before this time next year. I began this blog in January three years ago with the intention of recording my PhD journey, and it has become more of a reflective, sharing and learning tool than I ever imagined – a journey into open. Formality versus open A common tension I’ve experienced during the course of my research is the open and informal nature of shared connections and learning on social networking sites and the relative formality and rigidity of academic learning within a University context. In the blogosphere, learning is shared peer-to-peer in the spirit of collaboration. In an academic paper or a chapter in a book there is both a formal style to comply with and access constraints in the shape of a subscription or purchase. In the blogosphere feedback is instant and ideas built upon ideas; in the formal arena writing is produced as finished and polished. I appreciate the rigour of formal research and peer review whilst I enjoy the emergent nature of learning through social networks. They are not necessarily mutually exclusive, but I do wonder if open has more transgressive possibilities. Open as a way of life I’m currently reading David Price’s Open: how we’ll work, live and learn in the future and his critique of formal learning resonates with the tensions I describe above. With audacious optimism, he argues that:   “going ‘open’ is a social revolution that represents a fundamental challenge to the established order...