Great launch last night for healthtalkonline’s new clinical trials modules in which parents and young people talk about their experiences, warts and all. I think the next module in the offing is on ‘Biobanking’ with quite a few more in development.
It is a strange but true and rather brilliant fact that the actor Hugh Grant has been a strong supporter of DIPEx (the charity being healthtalkonline) in the past. Meanwhile I noticed earlier this week that, across the pond, Michael J Fox is behind new ways of recruiting potential participants to clinical trials for Parkinson’s Disease. And, would you know it, but Thom Yorke is doing the intro on the website to youthhealthtalkonline as linked too above.
Its beginning to sound like a reality show isn’t it? At least one of these actors will be a dude in your eyes I am sure, no matter what your age!
We need more dude supporters of clinical trials…and that’s another fact! Suggestions welcome. It would make a change from having to wince over the ridiculous health claims made by some celebs and so brilliantly highlighted by Sense about Science every year. However, as any fundraising charity will tell you, even with celeb backing it is the real voices of patients that resonate most with others - people like Alison Dixon and her son, Robert, who took part in the healthtalkonline module and who spoke so well last night. Their experiences and their willingness to talk about them will help so many other parents and young people come to the right decision for themselves.
After the speeches last night by Sir Iain Chalmers, Dame Sally Davies (CMO) and others there was a brief discussion. The main focus was not on patient participation in trials but about how to improve patient engagement in health research generally. Why can’t we link things like healthtalkonline to the UK Clinical Trials Gateway was one thought? Another was a further call to formally recognise in some way those patients who take part in a trial? And, finally, the idea that at the end of a trial participating patients are brought together to hear what the outcome of the study is, what was learnt and to what purpose.
It’s great to also hear that healthtalkonline has secured a partnership with Google and that they are now working on projects involving at least ten other countries.