Saturday, 15 December 2018

Why I no longer participate in your academic research projects

I no longer participate in your academic research projects, if I can help it, and I am starting to blog about some of the many reasons why. 

I haven't always been so jaded. I used to have a lot of sympathy for academics and clinicians looking to social media platforms for help to complete their projects, especially for students and early career researchers because, well, why not? Everyone needs to start somewhere; it's nice to encourage people and sometimes your research projects have seemed quite relevant and interesting.

But I can't do it anymore. I can't bear to complete even one more clunky questionnaire. I don't want to be patronised by one more pompous professor. I don't want to be given one more 'opportunity' to have my say or to share my story, only later to suffer the indignity of seeing your own improbable ideas 'emerge' from my data.  It's over. I'm done. I have no more stories left to tell you, except this one. And I'm afraid this is just a story of broken trust.

Before you say it, of course I know that not all researchers are rubbish. You remind me of this often, especially you the mental health researchers. Public intellectuals, polymaths and political activists alike, I know that you work hard every day, reaching out to stigmatised and marginalised communities, giving voice to the voiceless, unravelling the mysteries of the mind and translating them into ordinary, everyday language. You bear a heavy burden for me: it often hurts you more to listen to my pain than it hurts me to speak it, and it is only with the greatest humility that you co-opt my narrative and bastardise my words in order to demonstrate impact, garner income and ensure your own survival in the post-REF2021 world. How could I find fault with you?

So, if you are reading this and recognise yourself as one of the good ones, please don't @ me. Just take a home-baked cookie and sit back down, safe in the knowledge that this blog cannot possibly be about you.

There's no need to bake cookies for me in return; I'm not expecting this to be a popular blog and that's OK. 
 Research twitter has so many unwritten rules, so many ways to freeze out 'data' that doesn't fit. The frosty 'thanks but no thanks' in response to feedback on that questionnaire in which of course you see no fault. The faux-pologies for my 'feelings' about your ethical failings. The unsubtle public outpouring of your own sadness about any challenge to your expert status. And the sock puppets, oh my! Those sock puppet smackdowns from the most surprising of sources, insistent that my views on research integrity are quite simply irrelevant - because my words only ever had worth while they were serving your own interests - am I right, Professor? 

Many of the posts I'm going to publish have been sitting half-finished in my drafts folder for months, at least partly out of fear of the likely unpleasant reception. But, after a gazillion fruitless attempts to have my say on your terms, I need a place to speak my own mind, to tell you some of the things I've been thinking all along but somehow never quite got the chance to share with your SurveyMonkey.

So what I'm going to do over this series of posts is pick out a handful of research studies in which I've either taken part myself or which have had a significant impact on the communities to which I belong. And I'm going to talk you through my experience of participation in your research projects, from recruitment to publication and beyond.

I will begin by talking about the small things, the everyday indiscretions and disappointments that I know you really don't think are significant, and that you wish I'd stop mithering you about on social 
media, but that have added up over time to an abiding sense that your entire research industry has become one giant, state-funded piss-taking machine. Here, I want to talk about some of the many projects that clearly start out with honourable intentions but which nonetheless manage to irritate me every step of the way from the badly constructed questionnaire to the dubious analysis from which I very much doubt you can draw much meaning at all, and almost certainly not those neat conclusions at the end of your papers.  I've been absolutely spoilt for choice on the clunky questionnaire front, just over the past month on Twitter alone, but I'm going to begin this blog series with a personal account of my participation in the Leeds Patient Safety study, which I've followed from its first mention on Twitter in 2016, through to multiple publications in 2018.  I'll talk you through my attempts to raise concerns with the research team along the way, and then show you some highlights from the School Ethics Committee's
 ruling that some sensitive data over which I had the greatest concern turned out to be just fine because it was really absolutely not-data at all, having been collected during a definitely-not-part-of-the-research-project. Bless me, I must be so very silly and confused. 

Secondly, I will move on a smaller subset of really rotten research projects that were pretty much egregious from the outset. Here, I'll be looking in detail at some ADHD studies from the Open University and I think I'll start with the one about Parents' Constructions of ADHD... or was it Tourettes... or autism? Unfortunately, it never did become clear, and I can't help but wonder if, by the time a book deal was on the table, trifling matters around research quality and integrity just had to be set aside. But, with apologies to the PhD supervisor who really doesn't want to talk about it
I need to break it to you that research participants don't disappear in a puff of smoke after your interviews are complete. Your projects have a real impact on our real lives and, now I've had a chance to read the thesis and the book - for me at least - the conversation has only just begun.

Finally, there is the whole murky area of what I call covert research; you may know it better as internet-mediated research. It's the kind of research where you 'give voice' to me by taking my words from my social media accounts, often regardless of the sensitivity of the content and without my knowledge or consent, in order to put your own name in lights at conferences and to add your own insights to the scientific record. It's in this area that Twitter discussion has been most contentious and, of course, when I asked mental health service users on Twitter to share their own thoughts on the matter, a number of you academics scurried in like rats up a drainpipe to explain that you had rights so we were wrong.  Bless your hearts. I realise that it is very difficult for you to hear my voice on the issues that matter to me.  But I'm going to attempt to break down some of the relevant issues here around research ethics, academic standards and copyright law - just by way of letting you know how I will deal with any of you that cross me in future, in an arena where I think your 'right' to research me is not quite as clear cut as some of you claim. As a specific example here, I'm going look at a study on Bipolar Bloggers, supervised by Dr Joanna Moncrieff at UCL, that fine research institution where 'excellence and integrity are inextricably linked' - except when they are not.

So, there you have it. This is what will be keeping me busy over the next couple of months while your plaintive cries for research participants whizz by my Twitter timeline unanswered.  I will say it again: not all researchers are rubbish, of course they are not. But after suffering so much of your nonsense for so long, how can I know who the good ones really are at the point that you invite me to join your study? I can't know, can I?  And now the trust is broken and so I'm afraid I can't help you anymore. No exceptions. I'm done. 

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1 comment:

  1. Wonderful. I, too, was participating in academic surveys and studies online until I pointed out that some of the presentations of the questions, e.g., with flashing or strobe lights, could trigger seizures in susceptible participants, and I was told I wasn't "cooperative enough" and given a huge list of medical questions to answer before I could "continue to participate." Needless to say, I did not fill out any of those intrusive medical questions.