You may recall me reviewing ‘People are messy,’ the play about public involvement in health research that has been developed by Theatre of Debate with the support of the Oxford Biomedical Research Centre (BRC). I gave it five stars. As the play has been touring schools, young people have been invited to enter a competition… Read More Young award winners and public involvement film showing announced @OfficialNIHR #Peoplearemessy
A week before the Brexit referendum I had coffee with a friend and colleague. As we debated what the likely result might be, they jokingly remarked: ‘Simon, I’m not sure I like this public involvement business any more.’ How we laughed. We often talk about public involvement as ‘democratising’ a process; a condiment to be… Read More Blog: Life in public involvement in research after Brexit.
Some of the leading life sciences organisations in the UK have joined forces to issue a ‘statement of aspiration’ about the involvement of young people in research saying: ‘Collaboration between young people and commercial researchers should become an established and normal way of working. Learning from this collaboration should be actively translated wherever possible to… Read More Blog news: Life sciences giants join forces to promote young people’s involvement in health research
I am sure many of you will have heard the legend about the Trevi Fountain in Rome which inspired the 1954 film ‘Three Coins in the Trevi Fountain’ and title song. It says you must throw three coins into the fountain: the first guarantees your return to Rome, the second leads to a new romance,… Read More The NHS is becoming like the Trevi Fountain…#sixprinciples
You probably don’t need to hear another thing about the EU, do you? (By the way what a terrible EU referendum campaign it is – have you ever heard such hyperb******s from our politicians?) But this really is a good thing. Following the passage of the new EU Clinical Trials Regulation, the European Commission has started… Read More EU issues draft guidelines on providing clinical trial results so you and I can understand them #clinicaltrials
I didn’t know this but, apparently, the word ‘t-shirt’ does not just refer to the summer garment. It can also be used to describe a very brief ‘blog posting.’ There, I bet you feel better for knowing that? Anyway, here’s my washed, cleaned and ironed t-shirt for today. Later this afternoon I am speaking to… Read More Today’s public involvement in health research t-shirt
The results of the National Cancer Patient Experience (NCPE) 2015 survey were published this morning. It’s an important insight into what people with cancer around the UK think about their care and treatment. For the last three years – and thanks to the tenacity of colleagues on the National Cancer Research Institute Consumers Liaison Group (NCRI CLG)… Read More National cancer patient survey raises more questions about patient access to research
It’s worth noting this new report by Sense About Science published today. Entitled ‘Missing Evidence: an inquiry into the delayed publication of government commissioned research,’ it uncovers a quite staggering degree of ignorance within many Government departments about the policy research they have or have not commissioned, its status and publication. Over £2 billion worth! … Read More Government research going AWOL #MissingEvidence
My tickets for the FA Cup Final arrived in the post yesterday. I am very excited indeed. I have a feeling that my team will bring the trophy home to south London where it belongs. It is that time of year when football fans are living on their nerves as their team battles to win… Read More ‘Stand up if you love clinical research’ on Intl Clinical Trials Day, 20 May #NIHRoktoask #NHSresearch
Blushes all round. ‘Boaty McBoatface’ is the name that has come top in a Natural Environment Research Council (NERC) online public poll to name their new £200 million pound research vessel setting sail in 2019. Oops! http://www.bbc.co.uk/news/uk-england-36064659 An NERC panel must now meet – no doubt in a dark, wood-panelled corner and with cold flannels… Read More Mr #BoatyMcBoatface was a shipwreck waiting to happen in a world of science with no lighthouses
The rise of YouTube is something to behold. In last week’s Sunday Times – under the headline of ‘From YouTube to our tube’ – Youtube’s CEO Susan Wojcicki talked at length about how she wants the company to become the world’s most important broadcaster. And if life in my household is anything to go by then… Read More YouTube is becoming the test tube of science comms – here’s 27 examples worth viewing @OfficialNIHR
I do not ascribe to the view that you have to be ‘scientific literate’ as a pre-requisite to taking part in science. In the same way that I do not think you need to be fluent in French before you can enjoy a holiday or set up home there. Nothing beats immersion in the way of… Read More Have you joined the new online course revolutionising the way the public can learn about clinical research? @NIHRCRN MOOC
It is curious how life often brings us back to places once well-trodden but then lost to us for one reason or another. Last week I was in Stockport. I have a vivid childhood memory of my mother taking me by train to have my broken arm re-set and put in plaster in the hospital… Read More A trip down memory lane makes me think Stockport is the perfect place to begin a coup ‘data’
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… Read More A town hall meeting in Camden held a mirror up to public engagement British style and it wasn’t pretty
In my opinion there are ‘happy clappy apps,’ ‘crappy apps’ and then there are the ‘apps’ that work. Late last year PatientView – the font of all knowledge on what makes a good app from a patient perspective – published a survey showing 9 out of 10 app users found most health apps to be… Read More Some gr8 new health research apps involving citizens are coming online in 2016. Here’s a quick peak.
If ever you needed evidence of the importance of celebrity in health awareness campaigning then look no further. A paper in the Journal of the American Medical Association Internal Medicine reports that the actor, Charlie Sheen’s, disclosure last November that he is HIV positive resulted in a 265% increase in news reports mentioning HIV and 6500 news stories… Read More Putting a Sheen on public awareness in health matters #Sheeneffect
I noticed with interest that there is a motion before the Church of England synod meeting this week suggesting that it is a Christian duty to donate blood and organs? Quite apart from conjuring up some interesting visions of the collecting plate in our churches this coming weekend, it did get me thinking about how… Read More Thought for the day: would you pay higher taxes to fund medical research?
On Wednesday night I travelled to Oxford to see one of the first public performances of a new play about public involvement in health research called ‘People are Messy.’ The play – aimed at young people – has been produced by the Theatre of Debate with the support of the NIHR Oxford Biomedical Research Centre… Read More First Night Theatre Review: People are Messy ⭐️⭐️⭐️⭐️⭐️ #publicinvolvement
I once told a conference that it was my perception that rare disease communities were in a stronger position to put research at the top of the agenda; that patients, carers, clinicians and researchers found it easier to get around the table in these areas, were able to work more closely together and mobilise for… Read More Understanding why people with rare diseases lose out on research may help those with other more common conditions @rarediseaseday
We live in strange times. Lately I have been watching ‘Deutschland83,’ a wonderful German language spy story set in Berlin. As an 80s child it evokes many memories for me. The music. The fashion. The fear and paranoia of those times when complete annihilation was just the press of a button away. The dogmas of… Read More Are we really in this together?