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) … Continue reading National cancer patient survey raises more questions about patient access to research
Author: simondenegri
Government research going AWOL #MissingEvidence
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! … Continue reading Government research going AWOL #MissingEvidence
‘Stand up if you love clinical research’ on Intl Clinical Trials Day, 20 May #NIHRoktoask #NHSresearch
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 … Continue reading ‘Stand up if you love clinical research’ on Intl Clinical Trials Day, 20 May #NIHRoktoask #NHSresearch
Mr #BoatyMcBoatface was a shipwreck waiting to happen in a world of science with no lighthouses
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 … Continue reading Mr #BoatyMcBoatface was a shipwreck waiting to happen in a world of science with no lighthouses
YouTube is becoming the test tube of science comms – here’s 27 examples worth viewing @OfficialNIHR
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 … Continue reading YouTube is becoming the test tube of science comms – here’s 27 examples worth viewing @OfficialNIHR
Have you joined the new online course revolutionising the way the public can learn about clinical research? @NIHRCRN MOOC
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 … Continue reading Have you joined the new online course revolutionising the way the public can learn about clinical research? @NIHRCRN MOOC
A trip down memory lane makes me think Stockport is the perfect place to begin a coup ‘data’
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 … Continue reading A trip down memory lane makes me think Stockport is the perfect place to begin a coup ‘data’
A town hall meeting in Camden held a mirror up to public engagement British style and it wasn’t pretty
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 … Continue reading A town hall meeting in Camden held a mirror up to public engagement British style and it wasn’t pretty
Some gr8 new health research apps involving citizens are coming online in 2016. Here’s a quick peak.
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 … Continue reading Some gr8 new health research apps involving citizens are coming online in 2016. Here’s a quick peak.
Putting a Sheen on public awareness in health matters #Sheeneffect
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 … Continue reading Putting a Sheen on public awareness in health matters #Sheeneffect
Thought for the day: would you pay higher taxes to fund medical research?
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 … Continue reading Thought for the day: would you pay higher taxes to fund medical research?
First Night Theatre Review: People are Messy ⭐️⭐️⭐️⭐️⭐️ #publicinvolvement
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 … Continue reading First Night Theatre Review: People are Messy ⭐️⭐️⭐️⭐️⭐️ #publicinvolvement
Understanding why people with rare diseases lose out on research may help those with other more common conditions @rarediseaseday
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 … Continue reading Understanding why people with rare diseases lose out on research may help those with other more common conditions @rarediseaseday
Are we really in this together?
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 … Continue reading Are we really in this together?
Top-tips for involving young people in research and other brilliant resources @GenrYPAGs
Is it me or is 2016 'full-on' or what? It is as if someone has put something in our water supply. It's nearly February already. My good colleagues in public involvement are hitting the sort of productivity levels last seen in a Japanese car factory in the 1990s. Yesterday I blogged about two new 'manuals' … Continue reading Top-tips for involving young people in research and other brilliant resources @GenrYPAGs
Blog: Have you ever knowingly been oversold PPI in research? Then, there’s help at hand #howtoinvolve
I didn't think so. Do you get those nagging calls about PPI? It's usually early evening. Sometimes it is a recorded voice message. Sometimes a text. Very occasionally it is a real person from the unreal environment of a call centre. Unfortunately they are all contacting me about that other PPI - yes, Payment Protection … Continue reading Blog: Have you ever knowingly been oversold PPI in research? Then, there’s help at hand #howtoinvolve
Patients wanted to talk about public involvement in surgical trials #PIRRIST @joannacrocker
I've been helping colleagues get this study off the ground so would appreciate your help either in spreading the word or by contributing directly. As follows. ....Are you currently involved in a surgical research trial? If so we need your help! We are looking for patient or lay advisers, partners or representatives to take part … Continue reading Patients wanted to talk about public involvement in surgical trials #PIRRIST @joannacrocker
Mary Poppins no longer has the answers in medicine – for either doctor or patient
It is said that when Robert Sherman sat down to write 'A Spoonful of Sugar' he was inspired by his children's tale of being given their polio vaccine on a sugar cube. The iconic song from Mary Poppins, lyrically captures a moment in time when the relationship between society, medicine and research was a more … Continue reading Mary Poppins no longer has the answers in medicine – for either doctor or patient
There’s nothing wrong in being a poster child for public involvement @bournemouthuni
The small things in life can tell us much about how the world is changing. Whether it's commuters carrying bottles of water. Or the papers left on trains at the end of a journey. What might such tell-tale signs of cultural change be, when it comes to public involvement? Is it the fact that public involvement … Continue reading There’s nothing wrong in being a poster child for public involvement @bournemouthuni
From ‘spacewalking’ patients to Bowie, the literature on public involvement in research reached new Peakes this week
It's one of the hardest things they will have to do. It is physically and mentally draining. For many it will feel a lonely place. The atmosphere will be unlike anything they have ever experienced before. Some will feel as if they are in a state of suspended animation. Others will feel as if they have leapt off a cliff … Continue reading From ‘spacewalking’ patients to Bowie, the literature on public involvement in research reached new Peakes this week
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