In no particular order, here’s a few things that being a mental health academic on twitter has taught me:
1. Resist the urge to say “we’re not all like that…”
My own experience of this relates specifically to mental health, and I’ve written previously about my own learning curve of realising that wading into peoples’ accounts of negative experiences with mental health treatments/services/research with a defensive “We’re not all like that!” is unhelpful and inappropriate. The statement might well be true, but it can effect seem to be about silencing people who wish to express criticism, and valuing one’s own hurt feelings (“But I’m one of the good guys…”) over someone else’s need to talk about their experiences. This is especially the case in situations where there is a power imbalance – as with patients expressing their anger or upset being ‘corrected’ by health professionals insisting they shouldn’t generalise.
This issue is also prominent on twitter in the form of #notallmen. In this case, it’s a response used by women (and some men) who get fed up with reactions to their discussion of sexism being taken over by men insisting “Not all men are like that...”. As with the above, this is undoubtedly true – but it can have the implication of privileging the needs of those ‘other’ men over the need of women to discuss their negative experiences. The equivalent in each case would be someone mentioning that they’re in a lot of pain since they got hit by a speeding car, and you defensively responding “Not all drivers are like that!”. Well, quite… but maybe a response of “that sounds awful” or “sorry to hear that” would be a bit more appropriate?
2. Patients don’t want to be “put” places, including “the centre” and “in control”.
I’m absolutely guilty myself of trotting out the phrase “putting patients at the centre” or “giving patients’ control”. The issue here is that these phrases ironically continue a narrative of patients as passive, requiring us, the heroic, generous professionals, to “put” them into action or “give” them responsibility.
I’ve seen similar dislike of the phrase “capturing patient experience”, which again I’ve used a lot myself, and which is another example of seeming to value patients but actually maintaining the sense that their “experience” is something wild and untamed, and needs us to come along and “capture” it. (Take this further of course, and the analogy suggests we’re then holding it against it’s will…. It also now makes me think of butterflies being pinned lifeless to a page, recorded and contained, but with their true nature lost.)
3. The people talking about doing and the people doing aren’t always the same.
I’ve noticed two cases of this. Firstly, people I find online who are researching technology, communication and social media, and then don’t appear to have a twitter account or an up to date web page. Secondly, researchers who tweet a lot about patient engagement, the need to hear patient voices etc, but who seem to rarely ever respond to actual patients online who tweet them or blog about their research in a way that’s accessible to those patients. “My latest paper, on the hermeneutic phenomenology of dialectal epistemological discourses, is now out. Pt voice so important. (Paywall)”
4. People, on the whole, are rather nice.
I’ve had probably less than my fair share of people being outright rude to me, disagreeing with me for the sake of it, implying I’m somehow evil because of the research I do (after tweeting about trials once I got called “a neoliberal foetus”), and sexism online. However, on the whole, these experiences are in the minority. Instead, I’ve encountered lots of very nice people, shared an inordinate number of cat pictures, and quite often had a great deal of fun. Ta, twitter. Ta muchly 🙂