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… Read More 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… Read More 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… Read More We are looking for feedback on the #NIHRoktoask campaign from patients, researchers, everyone…. Please help and RT.

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… Read More 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.… Read More 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… Read More 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… Read More 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… Read More 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… Read More Cystic Fibrosis Gene Therapy Trial testament to the cf community as a positive, patient and persistent partner in research

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… Read More 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… Read More 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… Read More 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… Read More 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… Read More Going commando in public involvement in health research

Elevator pitches in health research: some examples…#whywedoresearch

Have you ever heard of ‘the elevator pitch?’  It’s the notion that you should be able to summarise and sell an idea in the 30 seconds or less it takes to get to the top-floor in a lift. I suppose the equivalent is the pitching of a film script to Hollywood producers.  For instance I just watched an… Read More Elevator pitches in health research: some examples…#whywedoresearch

Blog: our regions will need a stronger patient voice if health research gets the devolution bug

As a democrat it doesn’t sit well with me that the new interim Major of Greater Manchester is unelected. The excuses for it seem pretty poor. You should start as you mean to go on. Perhaps we should have sensed something was up when ‘DevoManc’ emerged as the nickname for the entity that will be… Read More Blog: our regions will need a stronger patient voice if health research gets the devolution bug