Type vaccines into twitter and under a new initiative you will be prompted towards information supplied by expert institutions such as the NHS or US Department of Health and Human Services. However, by directing audiences to these sources, do social media companies overlook the important role played by online communities of lay experts? In this post Stefania Vicari explores how one such community, #bcsm, has developed a longstanding and effective online forum for information sharing about breast cancer and suggests that these communities may provide a better model through which social media platforms could deliver authoritative information to users.

Facebook, Twitter and Youtube are often studied or reported about as either inundated with scientifically questionable and potentially harmful information, or as profiting from opaque uses of personal data. Their governance, in the form of business strategy and moderation policy, is now more than ever at the centre of public debate. Fake news, misinformation, bots on the one hand; privacy, algorithms and data on the other, have become buzzwords used to picture a gloomy scenario that leaves little space for talking about users and personal agency. But is this all we can or want to say about these platforms?

Health influencers: celebrities or ordinary users?

As a person who studies digital discourse and has experienced a number of personal health-related conversations for the past ten years, I have been grappling with these and similar questions for some time now. In a project I led a few years ago, I came to the conclusion that in 2013 Twitter users did not start talking about the BRCA gene mutation as a hereditary cancer condition when Angelina Jolie wrote about it in the New York Times; they had been there before and they stayed after. When Jolie’s second BRCA-related op-ed came out in 2015, the same influential users were still tweeting about BRCA and kept doing so after. Self-defined patient advocates had actually become stronger in their influence, overcoming advocacy organisations and other users. So while the Angelina effect led to a global increase in medical referrals for women with family history of breast cancer, a BRCA learning community predated and continued independently of this effect, with ‘ordinary’ patient advocates increasing their influence over the same period of time. This is probably why I am not surprised to see some of the same patient advocates ranked as top influencers by Symplur’s #bcsm metrics or recently identified among the top ten leading influencers in the whole field of oncology by the pharma industry. In both cases, a user’s influence is calculated as a combination of values, usually the number of followers, the activity rate, and the response received from other users (e.g., via retweets or mentions). While acting as ‘serial activists’ across health-related hashtags, these top users do not just influence the content of debates around health and illness, they help others to connect within ‘hashtag communities’ like #bcsm. But what content drives or populates these connections?

Mapping lay expertise on twitter

Mapping content in health-related Twitter threads is not an easy task, but it is one I have recently engaged with in the attempt to understand what health information is shared – and knowledge generated – in social media contexts.

Mapping attempt of a BRCA-focused conversation on Twitter

What is becoming evident while working on this project is that the resilience of tweet chats like #bcsm – or of other long lasting health hashtags – is not only nurtured by traditional dynamics of peer support grounded in the act of sharing personal narratives of health and illness. It is also rooted in the mingling of life experience and scientific information in hybrid forms of lay expertise.  Forms of expertise that are arguably similar to those discussed by Steven Epstein in the 1990s in relation to AIDS treatment activists’ participation in biomedical research and which eventually achieved recognition from the medical establishment. Do platforms and their architectures, norms and vernaculars, therefore affect the way this lay expertise is shared, developed or perceived by platform users and valued or exploited by traditional health stakeholders?

Lay expertise versus misinformation

It might sound ironic to talk about the emergence of lay expertise on Twitter, while Twitter itself is piloting ways to contain the effects of the health misinformation it hosts. As part of a recent initiative, the platform has launched a new tool that directs users searching for information on vaccines to ‘a credible public health resource’, i.e., the U.S. Department of Health & Human Services.

Twitter piloting tool to counter the spread of vaccine-related misinformation

While moving in the direction of regulating information retrieval in a way to foreground quality content, this initiative entirely overlooks platform dynamics, or the fact that Twitter users often prefer lived experience and human contact to institutional webpages. Failing to recommend other equally reliable, but more relatable expert sources, like quality group chats, does not help the cause. In other words, initiatives like this fail to acknowledge and build upon the potential impact of lay expertise, the same impact that has become evident at a micro-level in tweet chats like #bcsm, where patient advocates collaborate with scientific experts to provide quality information and peer support. The facilitation of similar dynamics at a macro-level would definitely require the implementation of a complex and expensive human-centred moderation system. But this might also constitute a way to start undoing the social media gloomy scenario we are now told about on a daily basis.


About the author

Stefania Vicari is a Senior Lecturer in Digital Sociology at the Department of Sociological Studies of the University of Sheffield. Her research explores the discursive dimension of different forms of digital activism, with a particular focus on activist cultures of health and illness. She is on Twitter as @StefaniaVicari


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