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 … Continue reading To be NIHR, or not to be, that is the question (but not a research one).
Author: simondenegri
Public involvement can appear like a foreign country to colleagues. Let’s make it a land they want to come back to.
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 … Continue reading Public involvement can appear like a foreign country to colleagues. Let’s make it a land they want to come back to.
Announcement of new contract for @NIHRINVOLVE awarded to the University of Southampton
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 … Continue reading Announcement of new contract for @NIHRINVOLVE awarded to the University of Southampton
We need to get personal about ‘antibiotic resistance’ if we want the public to help fight infection @wellcometrust
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 … Continue reading We need to get personal about ‘antibiotic resistance’ if we want the public to help fight infection @wellcometrust
We are looking for feedback on the #NIHRoktoask campaign from patients, researchers, everyone…. Please help and RT.
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 … Continue reading We are looking for feedback on the #NIHRoktoask campaign from patients, researchers, everyone…. Please help and RT.
Blog: Consent, consent, consent…….new public dialogue report from @HRA_Latest
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 … Continue reading Blog: Consent, consent, consent…….new public dialogue report from @HRA_Latest
A word in your ear about organ donation
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 … Continue reading A word in your ear about organ donation
Good manners in research #researchetiquette
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 … Continue reading Good manners in research #researchetiquette
Public get new tool to report problems with medicines @MHRAgovuk #medicineuse #adversereactions
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 … Continue reading Public get new tool to report problems with medicines @MHRAgovuk #medicineuse #adversereactions
Too much of a good cause…our lives are being slowly but surely ‘donorised’ by charities and fundraisers
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. … Continue reading Too much of a good cause…our lives are being slowly but surely ‘donorised’ by charities and fundraisers
More on mobile technology and health research…. #ResearchKit and @OfficialNIHR photo competition on theme of diversity and equality
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 … Continue reading More on mobile technology and health research…. #ResearchKit and @OfficialNIHR photo competition on theme of diversity and equality
The divide between public involvement in research and service delivery
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 … Continue reading The divide between public involvement in research and service delivery
George Osborne clearly read ‘Going the Extra Mile’ before his Budget statement #scipolicy
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 … Continue reading George Osborne clearly read ‘Going the Extra Mile’ before his Budget statement #scipolicy
Cystic Fibrosis Gene Therapy Trial testament to the cf community as a positive, patient and persistent partner in research
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 … Continue reading Cystic Fibrosis Gene Therapy Trial testament to the cf community as a positive, patient and persistent partner in research
Comment: Jeremy in the Hunt for better meds behaviour #medicine
I have heard it from both sides of the Atlantic. So there must be some truth in it. We are entering the era of 'retail Government.' Call it the commoditisation of politics if you like. But the idea is that the bigger the numbers - £ or people - a Minister can shift with his … Continue reading Comment: Jeremy in the Hunt for better meds behaviour #medicine
Blog: I have ‘This Feeling’ – Could 9 out of 10 health apps be simply useless from a patient and carers point of view?
PatientView - the originators of the excellent myhealthapps.net directory - published an important piece of work this week entitled: 'What do patients and carers need from health apps - but are not getting?' You can download it here. Their report looks at the results of a survey they conducted of over 1,000 patients and carers across Europe … Continue reading Blog: I have ‘This Feeling’ – Could 9 out of 10 health apps be simply useless from a patient and carers point of view?
What next in identifying patient priorities for health research? #JLAevaluation
I spent yesterday morning at an excellent event looking at the James Lind Alliance Priority Setting Partnerships (JLA PSPs for short!). #JLAevaluation Started in 2004, JLA PSPs have become a recognised and highly respected method for identifying shared priorities in health research among patients, carers and clinicians. That they have is a testament to its founders but also the excellent JLA … Continue reading What next in identifying patient priorities for health research? #JLAevaluation
From A to B on using medical records to help people get better
If the day has a 'y' in it then I guarantee that policy-makers and experts somewhere across Whitehall and Westminster are meeting to plot a way through the stalemate otherwise known as the 'use of health data.' That is: how we are going to use my and everyone else's medical records to make people better now and in … Continue reading From A to B on using medical records to help people get better
Is public involvement in UK health research a danger to itself?
The story of Concorde - the supersonic airliner that graced our skies for thirty years - was once a totemic example of the UK's inability to turn great innovation into commercial success. Lots of factors were said to cause its undoing. Concerns over its environmental impact. US protectionism. But it was its lack of commercial … Continue reading Is public involvement in UK health research a danger to itself?
Going commando in public involvement in health research
Its probably not the done thing for a National Director to applaud direct action. So I won't. But I couldn't help but warm to the recent appeal by Professor Luke Clements for carers to get in touch with their militant side. Prof. Clements advised the parliamentary committee that looked at the Care Act. In his recent talks around … Continue reading Going commando in public involvement in health research
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