Public involvement is beset by headless chicken syndrome in too many organisations

Last week I trundled up to Leeds for a conference about patient data. Hosted by Health Data Research UK, the National Institute for Health Research (NIHR) and NHS Digital it brought together patients and carers, data scientists, researchers, health professionals and managers for a discussion about the future of data-driven health research. The conference started... Continue Reading →

National Feedback Survey: What’s it like being involved in NIHR research? #MyNIHRfeedback

National Feedback Survey: What’s it like being involved in NIHR research? #MyNIHRfeedback What has been your experience of being involved in NIHR research? If you are a patient, carer, service user or member of the public who has been involved in our work then NIHR would like to know. You may have helped design a... Continue Reading →

Public involvement in research: what’s the point? #researchertraining @UCLHresearch

I suspect we all have moments when we will question the point of public involvement. Even those of us who are die-hard advocates. In the same way that the clergy seek to better understand their faith. Or scientists question Mark Walport. Researchers who are at the beginning of their carers are more entitled than most... Continue Reading →

Fantastic! Ground-breaking initiative gives people with dementia the chance to lead their own research about their condition @Innov_Dementia

Two former colleagues of mine - Rachael Litherland and Steve Milton - who run an incredible organisation called Innovations in Dementia have been awarded a Big Lottery Grant to run this new initiative which will provide people with dementia the opportunity to research their condition. So good to see this happening. Who better to DEEP... Continue Reading →

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 →

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