If you had one opportunity to talk to a colleague about what they’d like to do about climate change how would you go about it? I had one chance to ask a fellow scientist what it’s like influencing government on climate change, and… I blew it. The British government’s chief scientific advisor came to Manchester and gave an informative talk summarizing the likely cause of climate change and the monster challenges we face as a consequence. To cut a long story short, it was now just a matter of how ‘painful’ it would be to humans. The end. ‘Did anyone have any questions?’
A tumbleweed moment… it dawned on me: People don’t like pain and people don’t like asking experts questions in public. But someone had to say something to keep the ball rolling – my hand shot up before I’d even thought about what I was going to say… ‘how can citizen scientists play a role?,’ I asked eagerly. He looked at me, slightly puzzled, before gesturing in the air as he spoke about websites you can go to, to monitor your own carbon footprint. Next question. And so it went on… citizen asks a question, expert answers. We were talking about the same thing – but he’d never heard of ‘citizen science’ and I’d made the assumption that he knew what I was talking about. That’s the problem with when we talk as experts. We get stuck. We are not human. And no one listens.
In 1999 I was an amateur scientist, not yet qualified with my PhD, and looking for freelance medical writing work whilst I wrote up my thesis on ‘brain cell death’. My thesis was really about Parkinson’s disease – at least that’s what I told people – I wasn’t even looking at human brains – I was studying an animal cell model of Parkinson’s disease – not the real thing at all – some cells in a dish, poisoned until they died – but it was easy to tell people – ‘I study Parkinson’s disease’ – they seemed happy enough with that, avoid the details and get to the glory – my family were so proud. ‘Erinma studies Parkinson’s disease’.
And then I was in a room, at The British Library, being interviewed for the perfect writing job – summarizing research articles for a patient’s group – and my interviewer, Bill (not his real name) had Parkinson’s disease. Up until that point, I had never met anyone with Parkinson’s disease, despite studying it for four years – and Bill, was deciding my immediate future. Bill, who knew about Parkinson’s disease was deciding my immediate future when the research I was doing would likely have no impact on his future. Bill cared about the future, even though it would not make the slightest bit of difference to his immediate situation.
I got the job – and the next six months, working with the patient and carer group, I learned how to write in plain English about Parkinson’s disease and I learned a little bit more about what it was like to really live with Parkinson’s disease. People picked topics – are there studies on diet? What about the side effects from such and such a drug? I’d search the literature and write a summary. I would come back with a draft article and we would all meet and have a cup of tea. ‘Hmm’, one lady said, ‘you keep writing about this mouse model of Parkinson’s disease… I’ve been wondering about this mouse – she must be very busy!?’ People chuckled and sipped their tea. Lesson learned! No more mice models.
A problem shared …
That first job, I realize now, was my first step into citizen social science, where the people, interested in the same challenge, but from slightly different perspectives, come together, design a method to investigate the problem and creatively try and solve it together. They might document how they do it, look up how its been done before and celebrate the outcome, whether good or bad or suggest a new way to solve the problem. There were several years of working on culture change initiatives and educational initiatives in between and I was gently nudged, shaped by the people I worked with, community artists, social workers, youth workers, teachers, school kids, from scientist to citizen scientist.
Citizen social science is not so different from community based participatory research – its just got a snazzier name – thanks to citizen science and its permanent hashtag on twitter and the rapid rise in mentions in academic journals. Citizen science, where the public take part in scientific experiments, is often facilitated by the internet. Citizens help collect data, sometimes set the research questions and often find solutions to scientific problems faster than experts working in labs.
Whilst of course there are opportunities for social scientists, when it comes to citizen science methods and approaches – from playing games and creating puzzles to making observations – the real learning comes in the social life of the method – in the practice of the thing – of listening, trying and often failing to collaborate – trying again, talking, laughing, sharing, being creative, getting into the rhythm of the thing, together. Often, from here, cultural innovation springs.
Where can we go from here?
So what advice can I offer to those venturing into citizen social science or indeed citizen science? In a nutshell, be equitable — share the money, the power and the glory (the difference you made) — the public are getting wise to the fact that they pretty much fund your research and should have a say in how the money is spent and on what (even if research councils don’t, in practice, share this view — and could take note from Canadian Research Councils who do. As often as you can, step down from the mantle of the expert — it’s bloody lonely up there — and don’t forget that not everyone has a smartphone or access to your methods, data or academic literature. And these human problems — of how we collaborate, share resource, involve, participate, bounce back from failure — they interest me as a neuroscientist — to speculate on the role of our nervous system in all of this — our thoughts, our feelings, our emotions — our pain.
Which reminds me, if you get a second chance with the chief scientific advisor, he’s going on tour and — has a picture of a child in his slides — right at the end. He will talk about grandchildren but only for a moment. Ask him about that… gently mind, and only perhaps when he has stepped off the podium. I think there might be the beginnings of a story, a remembrance that we are in it together.