Question: How many patients does it take to change a lightbulb? Answer: No one knows, they are so rarely asked. The irritating thing is that even when patients are asked to change a lightbulb, they are not given the help and support to do it effectively. It’s a bit like asking someone to change one… Read More ‘How many patients does it take to change a lightbulb?’ Time to get serious about learning and development in public involvement
It’s high time we got over it. Pretending it doesn’t go on is foolish. Suspecting the worst every time they come near to one another is energy-sapping. No one is trying to deny history. But we are in danger of denying others a future if we continue to stand in their way. I mean, of… Read More Excellent new guidance published to help charities and pharma work together with the public’s trust @ABPI_UK @NVTweeting
Experts have warned that it could be one of the most dangerous developments of modern times. Scientist Imnot Kidding told the BBC today: ‘I can’t emphasise how frightening the future could become if we allow patients to think for themselves. They have all the data we need to outsmart us in the future, to literally… Read More Blog: We are with you, robots. Patient Intelligence has often been branded dangerous too.
I am in Helsinki, Finland, for a few days this week, sitting on a review panel for the ‘Joint Programme – Neurodegenerative Disease Research.’ It is the first time that this programme has involved patients in its review process for funding research so it feels a bit of a milestone moment. This, after twelve months, of… Read More Patients and researchers – sparring partners not hostile combatants
Making sure that research funded by the NIHR, charities and industry reflects the needs and priorities of patients, carers and the public is one of the most important agendas in public involvement. It has been a focus for much activity over the years with the outstanding James Lind Alliance (JLA) Priority Setting Partnerships (PSPs) being the… Read More NIHR revamps another route for patients, carers and the public to submit their ideas for research
Yes, wouldn’t it be great if the BBC did indeed launch ‘Science in Need?’ Then, for the first time in history, we could have a public broadcaster encouraging us to ‘SIN’ and be SINNERS with our donation to science. There is something rather beautiful but perhaps also tendentious about the juxtaposition of yesterday’s launch of the BBC’s new… Read More What next for the BBC: ‘Science in Need?’ #BBC #sciencefunding
Over the summer you may have caught the hullabaloo about Benedict Cumberbatch and his Hamlet currently playing at the National Theatre in London. Part of the fuss was caused by the Director’s decision to move Hamlet’s famous ‘To be or not to be’ soliloquy to the beginning of the play. To have poor old Benedict… Read More To be NIHR, or not to be, that is the question (but not a research one).
This time last week I was in France eating baguette and cheese and drinking red wine. Today it’s a tuna sandwich and packet of Hula Hoops. Yes, like many others in the UK’s version of France’s ‘La rentree,’ I am returning to work with a bump. A little later I am off to NHS Expo. It’s the… Read More Public involvement can appear like a foreign country to colleagues. Let’s make it a land they want to come back to.
Herewith a copy of the announcement that you will also find on the National Institute for Health Research (NIHR) and INVOLVE websites to day about the award of the new INVOLVE contract. This means INVOLVE now enters its second decade of being fully funded by the NIHR and the only such body of its kind… Read More Announcement of new contract for @NIHRINVOLVE awarded to the University of Southampton
The Wellcome Trust have this morning put out the results of a very interesting study about public understanding of antibiotic resistance. The research by Good Business found that people struggle with what the term ‘antibiotic resistance’ means, and are more comfortable with alternative terms such as “drug-resistant infections” or “antibiotic-resistant germs.” Also that, because of the… Read More We need to get personal about ‘antibiotic resistance’ if we want the public to help fight infection @wellcometrust
We are the only country which runs a public awareness campaign across our national health system to encourage people to participate in clinical research – NIHR ‘OK to ask’. We’ve been doing it for three years on the trot to coincide with International Clinical Trials Day (ICTD) in May. Now we want your views on how… Read More We are looking for feedback on the #NIHRoktoask campaign from patients, researchers, everyone…. Please help and RT.
Today’s rare foray onto the UK political scene by Tony Blair reminded me of a simpler time when politicians just used to repeat the same word three times for added emphasis. Or was it the daleks who used to do that? Funny how nightmares and the stuff of dreams can sometimes get confused in this way. Should either… Read More Blog: Consent, consent, consent…….new public dialogue report from @HRA_Latest
A word in your ear…. Worrying news indeed from the NHS Blood and Transplant authority. Yesterday they reported the first fall in a decade in the number of people donating organs after death. Also, a decline in the number of live organ donors. Wales is about to change its rules from December 2015 to one… Read More A word in your ear about organ donation
They say good manners can take you a long way in life. My first Chair at the Association of Medical Research Charities (AMRC), the wonderful Dame Bridget Ogilvie, used to swear by them (that doesn’t sound quite right doesn’t it?). She taught me how important they can be in bringing people with you – even… Read More Good manners in research #researchetiquette
Last year the Yellow Card Scheme by which health professionals and patients can report problems with their medicines celebrated its 50th Anniversary. A conference organised by the regulator which runs the scheme – the Medicines and Healthcare Products Regulatory Agency (MHRA) – was one of the highlights of my year. Not so much for what… Read More Public get new tool to report problems with medicines @MHRAgovuk #medicineuse #adversereactions
I do not envy the task of charity fundraisers. They will know that finance is the perennial worry of their Board of Trustees senior managers. Without a steady stream of money coming in the work of the charity will become unviable. Those who it aims to help will be left without support. The pressure is on.… Read More Too much of a good cause…our lives are being slowly but surely ‘donorised’ by charities and fundraisers
Interesting news from the US last night that a number of pharmaceutical companies – GSK and PurduePharma being the ones cited – are now looking into the use of Apple’s new ‘ResearchKit’ app in clinical research. ‘ResearchKit’ was launched in March this year with many saying it would be a game-changer in medical research. My understanding is that… Read More More on mobile technology and health research…. #ResearchKit and @OfficialNIHR photo competition on theme of diversity and equality
Yesterday I was on a visit to the West Midlands. The University of Birmingham, Birmingham Health Partners and West Midlands Genomic Medicine Centre (GMC) had invited me to talk about public involvement in research strategies for the region. Many organisations and voices were represented in the room. The discussion was lively and, at times, challenging. But… Read More The divide between public involvement in research and service delivery
It is some time since the Chancellor of the Exchequer and I have spoken. Forever, in fact. But I like to think we are in tune on some things…. The Guardian online has an excellent piece running this afternoon – written by Kieron Flanagan from UMIST – about the nods and winks on science policy… Read More George Osborne clearly read ‘Going the Extra Mile’ before his Budget statement #scipolicy
I hope you will have seen or heard the news today of the positive results of a gene therapy trial for people with cystic fibrosis. And this is how The Guardian is reporting it. Although it is early days and the improvement shown in patients only a modest one, it is nonetheless a very hopeful… Read More Cystic Fibrosis Gene Therapy Trial testament to the cf community as a positive, patient and persistent partner in research