Public involvement: do your parents know where you are? #CochraneForAll

Over a thousand people will be converging on Edinburgh in Scotland today for the Cochrane Colloquium. From the outset the organisers have committed to running the event according to 'Patients Included' principles. It shows. The public involvement content in the programme is more filling than a Scotch Broth. Attendees will need to pace themselves that's... Continue Reading →

‘White hot heat’ is not good for a tech-driven NHS but patients and health profs could be – comment #AI

There's a part of me that's warming to the new Secretary of State for Health, Matt Hancock. At least he has a passion - technology.  So much so, that the health tech sector and techies must be drooling at the prospects. Last week Mr Hancock set out his 'vision for a more tech-driven NHS' at... Continue Reading →

We must all sharpen our pencils if we are to burst the biomedical bubble @jameswilsdon @RichardALJones

One good thing about sleepless nights in this weather is the opportunity to catch up on your reading. In the wee small hours of this morning I decided to read a report entitled 'Bursting the Biomedical Bubble' authored by Richard Jones and James Wilsdon and published by the excellent Nesta just two weeks ago. It... Continue Reading →

If research funding can sometimes appear like a poker game, what cards do we hold as a patients and the public?

I once went to Las Vegas. It is a long, long time ago now. But I remember it being a very strange experience. Everything is turned in on itself. Away from the inhospitable heat of the sidewalks. Or, more accurately, everything - from hotel bedrooms to burger joints and cocktail bars - is turned to... Continue Reading →

‘Monsters Inc’ holds the key to assessing research impact #REF2021 #OxfordImpact

(Warning several spoiler alerts!) If the sight and sound of research institutions and organisations bellowing about their impact on life and the universe has a familiar ring to it, you’d be right. The reference point you are looking for - but have understandably mislaid - is ‘Monsters Inc.’ The brilliant 2001 Pixar animation in which... Continue Reading →

Billy and Charlotte Caldwell’s story highlights wider issues to do with patient experience

I was delighted to see that Billy Caldwell had been discharged from hospital yesterday. This, after the Home Office granted a 20-day licence for the cannabis oil that alleviates the seizures associated with his epilepsy. The substance had been confiscated on his arrival in the UK from Canada with his mother, Charlotte, last week. Shortly... Continue Reading →

NIHR publishes latest data on patient experience in research, provides patient pathway to study success @NIHRCRN @NHSRDForum #clinicaltrials

Hats off to the National Institute for Health Research (NIHR) Clinical Research Networks who published the latest data on patient experience in research this week. They have now been tracking patient views on participation for three years and with each report we gain a more informed picture of what matters to them. And with the... Continue Reading →

What have Academic Health Science Networks (AHSNs) ever done for you and I? #AHSNs

I have written a fair bit about Academic Health Sciences Networks (AHSNs) in the past. Not always favourably I'll admit. But that was then and this is now. I am pleased to report that, as of May, the 15 AHSN have been re-licensed/re-designated/re-booted (select as necessary) for another five years with NHS Chief Executive, Simon Stevens,... Continue Reading →

Thought for the day: a schoolfriend’s untimely death highlights the importance of choice to our dying day

A dear schoolfriend of mine, Sara, will be laid to rest today. We found each other on Facebook three years ago after a 30 year hiatus. I enjoyed our mutual 'likes' of one another's quirky musings, the various photographs of holidays and birthdays, and the occasional sharing of news about our respective families.  I had... Continue Reading →

Public involvement will be crucial to new NIHR ARCs and the research implementation agenda #CLAHRCs #ARCs @OfficialNIHR @NIHRINVOLVE @ClahrcP

It doesn't matter where you are in the world patients and carers have the same questions about research. This week I am in Sydney, Australia, at the invitation of the Australia Dementia Forum hosted by the National Institute for Dementia Research.  It has been a fascinating two days. Most of all I have enjoyed meeting... Continue Reading →

Fighting talk does not improve lives @macmillancancer @DyingMatters

Macmillan Cancer Support has today drawn attention to the negative impact of 'fighting talk' on people living with cancer. The charity says the findings of its latest survey show that people find it more difficult to talk honestly about their experiences because of the pressure they feel to be positive. One in four people said that they... Continue Reading →

Hey Prof! We need to talk about feedback. It’s not about ‘closing the loop’ but learning together. #PPIFeedback #NewGuidance @CRIPACC1

If you haven't read Elspeth Mathie (@elspeth_mathie) and colleagues' excellent paper 'Reciprocal relationships and the importance of feedback in patient and public involvement: A mixed methods study'  in Health Expectations then I highly recommend a read over the next few days.   Their small but significant study  - which was funded by the National Institute for Health... Continue Reading →

Comment: @ABPI_UK survey reaffirms gap between public appetite for, and patient perceptions of access to, health research and innovations

The Association of the British Pharmaceutical Industry (ABPI) is shaping up for its annual conference later this week. I see from the programme that the heavy-hitters of British science such as Sir Mark Walport from UK Research and Innovation (UKRI) will be out in force to give their perspective on the big picture. As a... Continue Reading →

‘Sticking with it’ – retention issues in public involvement and health research

This week I had the good fortune to be on the judging panel for the NIHR Clinical Research Networks/McPin Foundation/MQ 2018 award for service user and carer involvement in mental health research.  It was a brilliant field to choose from. The winners will be announced very shortly. One of the reasons I readily take up... Continue Reading →

UK public involvement in research standards launched today – seeing the wood and the trees. #PatientsFirst2018

Today, the National Institute for Health Research (NIHR), Chief Scientist Scotland, Health and Care Research Wales and the Public Health Agency Northern Ireland, launch UK-wide standards for public involvement in health research. You can find them here: https://sites.google.com/nihr.ac.uk/pi-standards/standards Building on INVOLVE’s values and principles for public involvement published several years ago, the standards have been... Continue Reading →

Messages about health research are not being heard at home where they should be – HRA/NIHR public survey Blog #2

My blog yesterday, looking at the latest public poll results published by the Health Research Authority (HRA) and the National Institute of Health Research (NIHR) (https://twitter.com/sdenegri/status/971701304849522688?s=21) looked at the question it raised around diversity and inclusion. But there are other important findings it is worth reflecting on. That almost half of survey respondents said they... Continue Reading →

I’m pro co-pro are you? The march of co-production continues – here’s the final guidance from @NIHRINVOLVE on the principles of co-production #Coproduction

Two blogs in one day. Blimey. I'll be giving away small packets of face cream or toys with the next issue at this rate. Someone asked me recently whether co-production was going to be the only thing that mattered in the future. Is all that is currently known as public involvement going to be painted... Continue Reading →

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