Feb 19
There’s a growing obsession with digital health gadgetry. Self trackers, health apps, bionics, telehealth services, health robotics and bio-data analytics… aren’t these all means to revolutionising healthcare and personal wellbeing?
When it comes to commercial investment, government funding and institutional support for research and innovation, everyone loves the Big Fix, the flashy tech and a rapid fire Agile make-and-test approach. (Get ready to start your design-sprints Scrum Masters).
It just seems to me like we’re missing a trick. Although it has become almost banal, we don’t yet know enough about what personal and collective engagement with health online can achieve.
There are a lot of good reasons to know more about how people use the internet and social media (in its broadest sense) to address their health and wellbeing. How do we already deal with health collectively?
For many people — more than you’d expect —managing a health condition involves gathering information and connecting with others in a hybrid form of clinical and digitally enabled selfcare, while seeking and offering an extended network of social support.
This could be anything from Googling symptoms, investigating local health services, perhaps even buying unlisted drugs through cryptomarkets on the darknet. It is also about the many different community platforms connecting people with those who share their health conditions in the hope of finding some way of dealing with them.
In dedicated online health forums, on Tumblr, Instagram, Facebook groups, blogs and personal pages, even on Pinterest, I’ve seen desperation and deep dispair, and the most amazing examples of human giving in the form of expansive networks of empathy, guidance and health advocacy, alongside inventive selfcare techniques. There are downsides to collective digital healthcare – these same mechanisms enable anti-vaccine groups and health misinformation. How do we foster the one and guard against the other?
Digital media studies approaches have a lot to offer public health organisations looking to innovate. Concepts of participation, mobility, collectivism, inclusion, engagement, literacy and personal media accounting are well thought through already. Digital health participation involves each of these ingredients in combination. User practices, platform affordances and politics, and connective action – these conceptual tools can set a course for a different kind of “big fix” for public health problems.
The goal is to reach beyond the “solutionism” that drives much digital health tech development. Let’s look to positive communities of practice, and the platforms, mechanisms and user practices that enable social support and self-care.
Community-led digital health
How do we learn to live healthily today?
Whether or not we’re dealing with a significant or complex health problem, a chronic illness or mental health issue, a lot of time online and on social media is devoted to this question. How do we learn to live a healthy life through our social interactions online?
These are staples of the internet of social health: Instagram food and cooking tips. Personal fitness journeys. Meditation, mindfulness and wellbeing techniques. Work-life balance, productivity, de-stressing, de-cluttering — Marie Kondo and all the others. Recommended health products and remedies. Life-coaching. Sexual health and healthy relationships. And my personal favourite: #inspo quotes as guides and oracles for a better day or life.
All of these practices and more have come to replace (or maybe augment?) both word-of-mouth remedies and a self-help industry that fueled magazine, book publishing and cable TV empires for decades.
Online health communities have been around for a long time now, but their public health effects are not all that well understood.
In the early 1990s, Howard Rheingold set out his famous account of the San Francisco Bay Area discussion forum the WELL in his book Virtual Community. Early on in that widely cited book, he describes the typical workings of the ‘parenting conference’ he moderated, which was enlivened by a new topic titled ‘Leukaemia’, set up by a user to discuss the disease ‘both as it affects my family and what is known about it generally’.
Back then, Rheingold and other internet researchers and enthusiasts were most interested in the idea of the “groupmind” or “hivemind” and its potential to exceed an individual’s ability to solve a problem (like how to deal with a leukaemia diagnosis). Rheingold did establish a kind of measure for digital community, which he saw as constituted when enough people interact with each other, with sufficient feeling and intention over a sustained period.
Since that time, a body research has explored the health outcomes for people who participate in “online health communities”. This is a catch-all phrase that probably doesn’t do justice to the things that happen everyday in the many community platforms and sites that create an environment conducive to people seeking and offering help with health issues amongst strangers.
The new publicness of personal health issues, the intimate sharing and collective responses, these facets of digital cultures have taken some time to rise to the surface amongst all that networked technologies have achieved. And while that publicness is not comfortable for all, it brings about a major shift to the sociality of health.
In their recent book The Platform Society, Jose van Dick, Thomas Poell and Martijn de Waal use the phrase “patient experience exchange” strategically to characterise the use of commercial health platforms, and their role in the commercialisation of health data (PatientsLikeMe is their case study). Like many others, (e.g., Deborah Lupton), they are critical of the “datafication of patients’ personal illness” through these kind of platforms, arguing that datafication more or less precludes any real patient empowerment or benefit.
But there is plenty of evidence that the vast range of online health community platforms and groups address needs not met by healthcare services and institution. They provide an architecture for organising collective actions and interactions (to paraphrase van Dijck, Poell and de Waal), and they also extend the capacity of what’s known as social support.
Social support
Around 30 years ago now, and a decade before Rheingold’s account of emerging “virtual communities”, several trajectory-establishing books (references below) brought together research and theoretical approaches to what was called social support — a subsection of health, psychology and sociology research dealing with social influence and coping responses to stressors.
As a broad church the concept of social support has endured mostly due to the observable effects that either perceived or actual supportive networks and relationships have on health outcomes.
The basic idea is that if crisis or ill-health befalls us, we’ll fare better if surrounded by supportive family and friends. The resources they offer (material, psychological, informational) will improve our health and recovery.
Social support might be taken and explored further as a measure of social capital, social connectedness and personal resources (including health and wellbeing) combined.
Without appraising the details and veracity of this research field, some of the founding definitional insights on social support are helpful for understanding the broad potential of community-based platformed health in the contemporary digital age. Irwin and Barbara Sarason emphasised these factors:
Intimacy
Social integration through shared concerns
Reassurance of worth
The opportunity to be nurtured by others
A sense of reliable alliance
Guidance
All of these factors along with others (especially access to information and knowledge) are observed in research looking at online health communities today. They also go a long way to explaining the relevance of all of those internet and social media-related wellbeing practices, those things we do in an effort to live a healthy life.
This is not to say that these qualities of social support are universally experienced simply because of internet connections and forums. Far from it. The platforms themselves certainly matter — how they enable or moderate supportive community, or whether they seek to profit from it, matter.
A 2018 Pew Internet Research report on “Teens’ Social Media Habits and Experiences” notes a clear tension between the negative aspects of drama and social pressure on the one hand and social support, friendship and knowledge of the world on the other. 81% feel more connected to their friends and what’s going on in their friends’ lives. But only 68% feel as if they have people who will support them through tough times. The gap is important, and there’s work to be done to improve social media and forums for social support.
The online health communities I’ve studied approach support for mental ill-health out of the sometimes intense spotlight of Facebook or Instagram. They’re often anonymous, moderated, dedicated to specific health needs, and not Facebook, Google, Microsoft or the like. They are contemporary, but in many ways cling to the soical promises of the early ideals of the internet’s digital communities.
What’s perhaps unique with online health communities is the importance of pseudonymity and disconnection from immediate family, friend and colleagial networks. This is about dealing with health issues in your own way, on your own terms, collectively, and without the social pressures or constraints of personal networks of family, friends and colleagues.
And there’s always this tension and balance with online forums — between agency, choice, individual personalisation, and collectivism and open participation in public health and wellbeing.
The old idea of self-help — as an aspect of consumer culture and the lifestyle projects of the post war period — comes together with peer-to-peer structures and extended social networks. Online health communities continue to reinvent the notion of health participation from the ground up, but have to do so in the ever changing platform and moderation ecosystem, in the face of often unhelpful requirements on the self, or algorithmic demands. This is about putting a verion of digital citizenship to work, fashioning solutions to needs that health professionals and institutions have not met.
Augmenting community health
Unless you’re involved in social health, it’s easy to ignore all this – perhaps you don’t use Facebook anymore (isn’t that a corrupt data-sharing corporation?) or Twitter (isn’t that owned by Donald Trump, or Russia now?), or WhatsApp groups, or spend time talking about health conditions in a dedicated community forum, or “what’s Tumblr?”, or “why on earth does Instagram matter for mental health?”, or isn’t Instagram the cause of all mental ill-health?
There’s work to be done in spending our time on these platforms better: in aid of social health and wellbeing, advocating for and supporting better health outcomes. The venues for personal, community or public health, whether formal or informal, can come together if managed with care and sector-wide strategy.
But I also get that health practitioners are flatout practicing, and managing with meagre health budgets and dealing with ever-changing bureaucratic tangles. It’s easy to argue from the sidelines to look at other ways of resourcing healthcare or improving health services and imagining personal wellbeing. In any case, it’s worth trying.
Sources and Some Further Reading
Rheingold, H. (1993). The Virtual Community: Finding Commection in a Computerized World. Addison-Wesley Longman Publishing Co., Inc..
Sarason, Irwin G., and Sarason, Barbara R.ed. (1985) Social Support: Theory, Research and Applications. Martinus Nijhoff Publishers, Boston.
Cohen, S. E., & Syme, S. L. (1985). Social Support and Health. Academic Press.
van Dick, Poell, T., and de Waal, M. (2018) The Platform Society: Public Values in a Connective World, Oxford University Press.
Fox, S. (2011) The Social Life of Health Information, 2011. Pew Internet Research Centre.
McCosker, A. (2018). ‘Engaging mental health online: Insights from beyondblue’s forum influencers’. New Media & Society, 20(12), 4748–4764.
McCosker, A. (2017). ‘Tagging depression: Social media and the segmentation of mental health.’ In Digital media: transformations in human communication, 2nd edn/Paul Messaris and Lee Humphreys (eds.), 3, 31.
McCosker, A. (2017) Networks of Advocacy and Influence: Peer Mentors in beyonblue’s Mental Health Forums, Swinburne Social Innovation Research Institute, Melbourne.
McCosker, A. and Hartup, M. (2018) Turning to Online Peer Forums for Suicide and Self-Harm Support: “It does help having you guys”, beyondblue and Swinburne Social Innovation Research Institute, Melbourne.