"So it’s a bit of a tightrope walking at the moment": moderation and online illness forums

As part of our research area, we’ve been interviewing forum moderators and asking them about their experiences of moderation.


Their accounts are peppered with references to traversing fine lines, balancing acts, dealing in trade-offs and generally finding themselves betwixt and between when making tricky decisions. As one moderator explained, “you can’t please everyone”.

But these moderators aren’t presiding over spaces where people chat about classic cars or share their love of 80s music. These are forums where people go to seek information, support and kindred company when they are living with a life-threatening illness. These are, you might say, emotive spaces where highly sensitive information is shared and challenging issues get discussed.

There’s also a fair bit of banter and general chit-chat as well, but the potential is ever-present for ‘high stake’ sharing about treatment options, stopping medication, purchasing ‘dubious’ medical supplements or talking about how an illness has affected one’s relationships and sex life.

So, we’ve been trying to understand what it is like to be responsible for ‘looking after’ a space which feels safe enough to hold such conversations. And, in turn, asking if in fact it is possible for moderators to do this without engaging in practices that affect other less obvious aspects of what ‘safety’ might mean for some people dealing with a life-threatening illness.

It’s possible that feeling safe for some might be the understanding that they can say anything they like, however they like, using as many expletives as they like, about living with a condition that terrifies them. And whilst these forums are primed as spaces for sharing experiences and getting support from others in the same predicament, there are rules and these create a precedent of what’s acceptable, which necessarily creates the other possibility of what’s unacceptable. However, it isn’t surprising that, in practice, things aren’t always this clear-cut – hence the various tightrope-like analogies.

Although the moderators we have spoken with don’t want to censor people’s feelings, they do feel strongly about protecting users and therefore they have to make unenviable decisions about when to intervene (remove, edit, “chip in”, steer), or not, in particular forum posts and exchanges. The moderators told us that they are on the look-out for swear words, posts with identifiable personal details, spammers, trolls and somewhat more elusively, when a “line is crossed”.

The first four seem reasonable (although some users clearly don’t like being told not to swear), but line-crossing, that can be more tricky. Essentially one user’s right to freedom of expression is weighed up against the potential for harm that such an expression may cause – to known (active) forum users. Moderators also need to think about the feelings of people who lurk, in other words they read what other people are writing but do not post themselves. These people may feel upset or distressed about what someone else has written, but are silent on the forum, and care moderators still need to consider how they might feel about messages that active users post.

Whether this perceived “duty of care” automatically makes users of such forums ‘vulnerable’ is (ethically?) a point for debate but, in the practical sense, if a forum is hosted by an organisation which is also involved in providing direct support to individuals living with a serious illness (as is the case with one of the forums we have looked at), sometimes moderators are making judgement calls which may have a direct impact on user safety and wellbeing – and doing so in time-pressured and highly public circumstances.

And so moderation is challenging and involves managing competing concerns which don’t always fit neatly into a two-way model of decision-making. In an effort to find out what has already been said about these challenges we searched for other research that explores experiences of moderating, but like Coulson and Shaw (2013) we have found very little.

Given that moderators can shape the dynamics of sharing and act, in some instances, as conduits for institutional messages and presences in forum spaces, we will be spending some more time thinking about moderation and its relationship to ethical practice in particular. 

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