Towards a manifesto for digital health #socialjustice

Towards a manifesto for digital health #socialjustice

What would a manifesto for digital technologies grounded in social justice look like? In other words, the development of digital technologies in health and care that enable an equitable distribution of wealth, opportunities, and privileges within society and which balance the interests of individuals, communities and institutions. After all the NHS is a collective endeavour – each of us contributing so that we all have access to health and care free at the point of demand. A few weeks ago I co-facilitated the first of mHabitat’s three Digital Humanities in Health and Care seminars along with Dr Helen Thornham from the School of Media and Communications at the University of Leeds. Along with a group of practitioners, technologists and academics, we considered the role of ethics and justice in respect of the inexorable rise of digital technologies in health and care. Mark Brown, one of our speakers, talked about the contested notion of social good in sphere of digital health: “Delivering public services is a political act. The shape of public services and how they feel are defined by political and historical realities. The decision of who pays tax, what taxes they pay, upon whom those taxes are spent and who it is that does the work is political. The ‘social good’ is not an uncontested idea. The culture of Silicon Valley is increasing looking, in the American phraseology, like a dumpster fire. Libertarian ideas run riot, with the very ideas that our public services in the UK are founded upon are seen as a deadly infringement of the rights of the individual to choice. Low tax, low regulation...
What does new power mean for the NHS?

What does new power mean for the NHS?

What do shifting societal trends towards a sharing economy mean for the NHS? Understanding New Power (Heimans & Timms, December 2014) sets out a framework to conceptualise shifts in power which are enabled by digital technologies in contemporary society: Old power works like a currency. It is held by few. Once gained, it is jealously guarded, and the powerful have a substantial store of it to spend. It is closed, inaccessible, and leader-driven. It downloads, and it captures. New power operates differently, like a current. It is made by many. It is open, participatory, and peer-driven. It uploads, and it distributes. Like water or electricity, it’s most forceful when it surges. The goal with new power is not to hoard it but to channel it.   The authors conceptualise a participation scale from consumption to co-owning, from old power models exemplified by Britannica to new power models such as Wikipedia. You can find out more about their framework in a fascinating Ted Talk given by Heiman here: Despite this being a contemporary framework, informed and enabled by digital technologies, it resonates with Shirley Arnstein’s Ladder of Participation which was published all the way back in 1969 and remains common currency in the field of NHS patient participation. Arnstein conceptualised an eight rung ladder of participation in decision making from manipulation and tokenism at the bottom to citizen control at the top. Heiman and Timm’s framework is like Arstein’s ladder, with the rocket fuel of technology as an enabler of new power possibilities for those of us who have access to the digital tools and literacy to take advantage of them.  ...
Three salutary reflections on the #SamaritansRadar app

Three salutary reflections on the #SamaritansRadar app

On the 29 October The Samaritans launched a new Twitter app called Samaritans Radar. A search on their promotional hashtag #SamaritansRadar reveals extensive conversation, much of which expresses disquiet from people with mental health difficulties, about the surveillance function of this app. A plethora of blog posts have offered varied perspectives and insights into concerns related to the app. Firstly @MarkOneinFour summarises the key issues being discussed on the PsychCentral blog and @bainesy1969  raises serious concerns over data privacy which issues he argues are being breached by the app. @BipolarBlogger raises ethical issues from a personal perspective in her post Mr Sam and his magical radar booth and @dr_know shares her thoughts as a mental health researcher on her blog. From a more technical perspective @akrasodomski questions whether algorithms can realistically turn tweets in to meaningful data about suicidal ideas and @adrianshort considers ethical issues related to data analysis. These are just a few of many blog posts and tweets that reflect expert opinion and debate on the topic.  An underpinning theme is one endemic to social networking sites – context collapse an idea coined by Danah Boyd (2014) – imagined and actual audiences as well as contexts collide where meaning and intentions can be easily misunderstood. The potential for well-meaning followers to take action or say the wrong thing on the basis of a tweet found through an algorithm is significant. The potential for non-well-meaning followers to add to people’s distress has also been highlighted. I’d like to contribute to the conversation by sharing three simple reflections from a user-centred design point of view – something we are thinking about a lot...
#JoyCott and the four affordances of networked publics

#JoyCott and the four affordances of networked publics

For some of us, the Asda #MentalPatient incident is etched on our memories as a Twitterstorm which took an issue from relative obscurity, to mainstream media notoriety in the space of an evening. Today a serendipitous scroll through Twitter led me to happen upon another corporate blunder – an indication of how much further we have to go in reducing stigmatising attitudes towards mental distress. Put simply, the @joythestore responded in a misjudged manner to a legitimate question from an individual on Twitter about a card they were stocking in their store. A couple of tweets later and @joythestore had unwittingly provided perfect content for another online protest. Rather than discuss the specifics of the offensive tweets, I will consider how the technical affordances of Twitter and the social practices of individuals combine to enable a viral protest. In order to do this, I draw on four affordances of ‘networked publics’ which, according to Boyd, are notably different in character from physical public spaces in the following ways: Persistence: the durability of online expressions and content Visibility: the potential audience who can bear witness Spreadability: the ease with which content can be shared Searchability: the ability to find content (Boyd, 2014, p.11). I use these four themes as a basis to examine how a mixture of technical affordances and deliberate social practices by people on Twitter, have turned the #JoyCott episode into a viral phenomenon. Persistence – the persistence of content on social media enables asynchronous conversations to take place without temporal limitations.  Persistence also means that content can be hard to remove.  Practices on social networking sites such...
Curating mental health content online – what do you think?

Curating mental health content online – what do you think?

Last night I took part in a conversation with @markoneinfour @psycle_doc @MHnurselecturer and @PsychorBust about curating mental health content online. You can find a storify of our conversation here. It came about as a result of Mark posting a blog about the demise of One in Four magazine with reflections on what had worked and what hadn’t. You can read his post here. My PhD research has primarily focused on the now sadly departed The World of Mentalists (TWOM) blog which curated blogs and tweets from around the madosphere on a weekly basis – the nearest thing I’ve found to regular curation of personal/unofficial conversations about mental health. TWOM ran its course and is testament to the ephemeral nature of content online – things come and go, work for a while, and then no longer work. What I loved about TWOM was the fact that it was curated in a highly participatory way (guest curators each week), with many different perspectives, and shared fascinating blogs that I probably wouldn’t have come across any other way. It was also outside the boundaries or official or institutional conversations. There are all sorts of different types of mental health content online, from blogs through to historical websites through to Wikipedia pages and Twitter chats. And no doubt lots more. Is it desirable to find a way of curating this content and, if so, what would be the best way of doing it? Lots of questions to which I don’t have the answers but I’d be very interested in extending the conversation further and knowing what other people...
The People versus The Institution – who wins?

The People versus The Institution – who wins?

What is the relationship between day-to-day practices by ordinary people in social media spaces and institutions? By institutions I mean structures of social order governing behaviours of sets of individuals in a community – in this instance, an NHS Trust or a professional body in healthcare. I’ve been mulling this over for some time… Remember when it was like the wild-west? When I first started my PhD research, a little under three years ago, I had become intrigued by everyday conversations in the blogosphere and on Twitter, which were either implicitly or explicitly contesting the dominant narratives of institutions.  There seemed to me to be a heady mix of people accessing mental health services and working in them (usually but not always anonymous) having conversations with a very different quality than those I was used to experiencing within the parameters of professional or institutional discourses. These seemed to me to be often bold, public conversations that challenged the status quo and at times felt wild and risky and exhilarating. The institution re-asserts itself During those three years I’ve noticed professional practices tiptoeing quietly but assuredly from the boardroom and the ward into social media spaces. This is exemplified by the plethora of guidance on use of social media for pretty much any professional group in the health sector. They are often defensively focused with a tendency to emphasise professionalism and boundaries over the affordances of public conversation to positively disrupt received relationships and effect change. I recall when I set up my blog in 2012 a colleague asked me how on earth I’d managed to get approval from my...