I was at Camden Town Hall on Monday night with a couple of hundred other citizens. We came together to talk about clinical research and I got a real kick out of it.
The occasion was the first ever ‘Clinical Research Education Event’ held in the UK by the American non-profit organisation, the Centre for Information & Study on Clinical Research Participation (CISCRP) as part of its ‘AWARE4All’ campaign (#awareforall). CISCRP have done around 60 similar events in the US over the last few years and had been persuaded to try it out in the UK. Simply put their goal is to:
‘make sure people can feel confident making decisions about taking part in clinical trials. We believe every trial participant should be recognized for their part in making new medical discoveries possible.’
On arrival people could get health checks and visit a number of information stands around the outside of the auditorium: from national charities to local community groups, research projects and companies. We all received a programme which included a booklet explaining the ins and outs of clinical trials.
Patients, passers-by, researchers and health professionals rubbed shoulders with one another in the hall. We heard presentations from researchers at Imperial and UCL universities. They talked about the latest work in asthma, dementia, mental health and paediatric research. PowerPoint was at a minimum.
ePatient Dave moderated a wonderful panel of patients – Sylvia, Esme, Jeff and Rosemary – who inspired and entertained us with their tales of being in a clinical trial. Jeff said he felt he had ‘got a full MOT’ by being in his trial of a new breathing aid. Esme who has first been in a trial as a young child said she and her sister had ‘felt important’ and liked the croissants! Rosemary who has Parkinson’s Disease talked about the trial she had been on which was testing a drug normally used in diabetes. It has involved two lumberpunctures and she has had to inject herself 48 times. ‘Would I do it again?’ she asked, ‘YES I would!’
At the end there was a raffle and I think people also got certificates of attendance. The morning after, I received an email thanking me for turning up, pointing me to more resources and encouraging me to share photos with others on Facebook.
Now, you could say that this sort of thing goes on up and down the country all the time. But I am not so sure. Or not in the same way anyway. Over the last few days I have been thinking about why I might say that.
Call me an unreformed democrat but I was thrilled to be talking about research in a venue in the community and I know it’s an important criteria for CISCRP when holding these events. Normally I get asked to speak at events held in a hospital or anodyne hotel room. But quite why we think people should want to make the trek out to places they associate with pain or sadness or to hotels where they wouldn’t share the Sunday lunch with their dog let alone friends and family never ceases to amaze me.
No, this was a truly ‘Town Hall Meeting’ in the classic American sense. Open, democratoc, engaging. As a consequence it really felt like we were being encouraged to gather and talk about research whatever our perspective. Not to be lectured at. Perhaps it helped that it was held in the evening rather than during the day when most of us are at work! (why do we do that?)
In Britain we would have agonised over that title – ‘Clinical Research Education Event.’ For months. ‘Shouldn’t it have ‘involvement’ in the title’ someone would have asked? ‘Aren’t we about other sorts of research too?’ another would have said. ‘It doesn’t say ‘patient’ or should that be ‘public’ anywhere on it.’ So the debate would have gone on. Fact is, it got us through the doors and we did talk about those things. Actually all of the patients talked about how they had become involved in wider aspects of research. As did I.
Our paternalistic nature as Brits would have caused us to worry long and hard about those health checks. A sharp intake of breath would have greeted the first mention of the idea. ‘Ooh no, I’m no sure we should…’ Then we would have worried and worried and worried until it was practically impossible to do. At which point we would secretly breath a sigh of relief that the decision had been made for us. But for me there was something powerful about joining hands-on care and research in the same room – after all, isn’t that what we have always said should happen?
We would have freaked out about the fact pharmaceutical companies were supporting the event. As if they were going to beat people up in the loos. But actually I think people can take pretty good care of themselves and often it’s the companies who could learn a bit about self-defence.
Raffles, certificates, thank you emails – gosh that sounds too much like fun. Anyway, surely people should only get a certificate if they have passed an exam or something?
I’m pretty sure we couldn’t have let the event go by without separating into groups at some point and appointing a facilitator and a rapporteur and holding up flip-chart paper with illegible hand-writing. Death by workshop would have been moments away.
Cringe-worthy some of it might feel to us. I also recognise that CISCRP has resources to hand (it’s the blind spot for Government where public engagement is concerned). Nonetheless, maybe we need to be shaken out of our tried and (allegedly) tested ways once in a while. To see different and entertaining ways of doing things. To knock us from our perch of superior complacency about being world leaders in patient engagement.
Anyways, you know what? I bloody enjoyed it. On this occasion I couldn’t give a flying fig if those present are none the wiser today about the difference between involvement and engagement. If it’s sparked a conversation with their family about research over dinner. Or spurred them on to have a conversation with their doctor, then it will have done its job.
High-fives all round.