I followed a really interesting convo the other night on Twitter which @Sectioned_ has summarised here: http://sectioneduk.wordpress.com/2013/08/16/but-were-not-all-like-that/. Essentially it deals with the issue of mental health professionals interrupting twitter convos about poor service experiences to say “But we’re not all like that!”. For example, they might explain that their service is better than that, or criticise the original tweet for generalising about bad practice when most services perform well. The problem is that while there is no doubt truth in those statements, and it is of course natural for hard working, conscientious staff to want to respond to perceived criticism of their service, there is a time and a place – and interrupting the conversations of service users (SUs) who are trying to express their disappointment is neither. It too often can lead to railroading, where the conversation is derailed from the original topic (in this case, the SU communicating their experience) onto the professional’s chosen topic (in this case, defending services or criticising over-generalisation about practice.) Obviously, this is unfair to the service user, and it doesn’t reflect particularly well on professionals, and neither party gets to have the conversation they want.
It made me realise that I have been guilty of this myself regarding PPI, or patient involvement. I follow quite a lot of people on twitter who are eg. Patient leaders, experts by experience with charities or universities. Sometimes there can be implicit – or exceedingly explicit! – criticism of patient involvement and PPI. Typically this is around involvement being tokenistic rather than genuine, of a focus on “listening exercises” without any corresponding doing or changing based on SU recommendations, and often the target is the very poor state of financing in PPI, with PPI reps typically under-compensated and a dearth of properly subsidised posts for service user researchers.
The funny thing is that I actually agree with these criticisms. And yet…my knee-jerk reaction is often to try to respond to this – to give examples of cases where PPI does work, to highlight that changes are happening. Which is exactly what @Sectioned_ and co were showing happens when patients make negative comments about services – the urge of the professionals involved, which is undoubtedly well intentioned, to put forward the other (often ‘their’) side, to emphasise that bad experience isn’t representative, to point out that….we’re not all like that. Ah…
So, I’ve made a mental tick-list now of things to remember next time this happens:
- It’s not about me. If someone is using twitter to get something off their chest, to express their frustration or disappointment, this is not a klaxon saying “hey Sarah, someone is saying Something About PPI which is different to what you’d like – get it on that!” This is especially the case, I’ve realised, when actually it’s several people talking to each other in a conversation which I just happen to be able to see because I follow all of them. I wouldn’t appreciate someone butting in on my much-needed venting conversation with a friend in the pub, so don’t do it on Twitter.
- One of the reasons I joined twitter and follow these people is to get a broader perspective, to hear views I wouldn’t normally hear. Not to try to change those views instantly or contradict them. Be careful what you wish for… 😉
- The people who’ve had these experiences are usually the ones who’ve been willing, and are still willing, to engage in public involvement, to work with researchers, to try to make the ideal a reality. They are exactly the kind of people that I am grateful for and that I need to learn from, not some enemy-of-PPI who is trying to undermine the approach. The best thing I can do is listen and learn, not leap in with a defence of PPI as bloody-wonderful-actually-thank-you-very-much.
I still do think that it’s important to know that there are some – even a lot – of researchers who really want PPI to work, who want to learn from the mistakes that have been made, who genuinely and passionately want public involvement to become an integral part of research. And I don’t think it’s in any way wrong to highlight that this can be a tough gig at times, with scepticism on both sides (from other academics and from the public), and that often by being the researcher who’s willing to engage in conversation, you end up taking a lot of stick that is perhaps intended for those researchers who wouldn’t bother. But the point is about learning when and how to express these things, and how to do so in a way that doesn’t try to railroad the discussions of service users or try to minimise their experiences.
Reflecting on this a bit more, I also realised it was interesting that I would turn to the involvement folk on twitter for some sympathy this, rather than looking inside academia for sounding boards and support. Interesting that I expected that those service users who were making the complaints would probably be more sensitive to my feelings about it than my own academic peers. Hmm…
I’m sure I will go on making missteps in my efforts on twitter – I’ve got lots to learn. But I’m optimistic that this example shows that twitter can be a good place to get a schooling on these issues. It’s not always comfortable, and a lot of times I worry that I’ve said the wrong thing (and maybe there are times I should be worried, but I don’t even realise). But this makes it challenging, and thought provoking, and full of potential. As the saying goes: If you’re not in over your head, then how do you know how tall you are?
Many thanks to @Sectioned_ and @BipolarBlogger for helping me work through my thoughts on this the other evening! And thank you to all those on twitter who are helping me learn A Lot about PPI experienced from the other side.