'I was averaging out at two meetings about digital per week before Christmas,' said my friend over coffee. As she said it I mused to myself that it must be at least one a day by now. Yes, 2019 has heralded more meetings, events and conferences about data, digital and AI than votes about Brexit … Continue reading What’s this screwed up ball of paper got to do with health data research? Read on.
patient and public involvement
New guidance on what it is to be a public co-applicant in research launched by @NIHRINVOLVE @HRA_Latest and @NHSRDForum
According to the recent national survey of people's experiences of being involved in National Institute for Health Research (NIHR)*, one in five patients, carers and members of the public told us they had been a 'co-applicant' in research. An equivalent number described themselves as being a 'member of a research team.' As a member of … Continue reading New guidance on what it is to be a public co-applicant in research launched by @NIHRINVOLVE @HRA_Latest and @NHSRDForum
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 Hey Prof! We need to talk about feedback. It’s not about ‘closing the loop’ but learning together. #PPIFeedback #NewGuidance @CRIPACC1
‘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 ‘Sticking with it’ – retention issues in public involvement and health research
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 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
Stop Press: Wake up and smell the coffee – consultation launched on UK-wide draft standards for public involvement in research @OfficialNIHR @ResearchWales @publichealthni CSOScotland @NIHRINVOLVE
How many of you have arrived at a meeting, gasping for a cup of tea, and been presented with a scene not unlike the one in the photo below? An array of coffee pots. All looking the same. But each holding something different. Coffee, decaffeinated coffee, hot water, tea (possibly). That's before we even get … Continue reading Stop Press: Wake up and smell the coffee – consultation launched on UK-wide draft standards for public involvement in research @OfficialNIHR @ResearchWales @publichealthni CSOScotland @NIHRINVOLVE
Lancet study puts NIHR top of the intl league table for health research in the public interest inc. public involvement @TheLancet
Yesterday the Lancet published a study by Mona Nasser, Mike Clarke, Iain Chalmers and others looking at how well eleven international research founders are doing to reduce waste in research. This follows a series of articles by Chalmers et al over the last couple of years on the same issue. The study scored funders using … Continue reading Lancet study puts NIHR top of the intl league table for health research in the public interest inc. public involvement @TheLancet
Flying the ‘standards’ for public involvement in health research: new initiative launched. Sign up here. @OfficialNIHR @NIHRINVOLVE @ResearchWales #ppistandards
The National Institute for Health Research (NIHR) together with its Welsh equivalent, Health and Care Research Wales, have joined forces to launch a project to develop standards for public involvement in research. The Public Involvement Standards Development Partnership has a website which went live today where you can learn more and sign up to be … Continue reading Flying the ‘standards’ for public involvement in health research: new initiative launched. Sign up here. @OfficialNIHR @NIHRINVOLVE @ResearchWales #ppistandards
NIHR launches new poster campaign on public involvement in research #twosides @OfficialNIHR @NIHRINVOLVE
The UK National Institute for Health Research (NIHR) has launched a striking new poster campaign entitled #twosides to raise awareness of the importance of patients and the public to making health and social care research happen. There are three posters to choose from in the series and you can download or order posters here. These … Continue reading NIHR launches new poster campaign on public involvement in research #twosides @OfficialNIHR @NIHRINVOLVE
Blog: some mental health research items inc. a new young person’s group being formed @McPinFoundation
If you follow me on Twitter (@SDenegri) you might notice that I regularly RT the work of the McPin Foundation which exists to 'transform mental health research by putting the lived experience of people affected by mental health problems at the heart of research methods and the research agenda.' It's a fabulous organisation. Prior to Christmas they … Continue reading Blog: some mental health research items inc. a new young person’s group being formed @McPinFoundation
Seeing the patient and carer behind the many faces of ill-health #multimorbidity @JLAageing @OfficialNIHR @EngageFMS
Last week I attended a National Institute for Health Research (NIHR) workshop on older people with complex needs. The more common term used in medical and scientific circles for 'complex needs' is 'multi-morbidity.' Which means suffering from two or more conditions at the same time. But I prefer the former term. As statistics from the Office … Continue reading Seeing the patient and carer behind the many faces of ill-health #multimorbidity @JLAageing @OfficialNIHR @EngageFMS
A new paper on ‘involving people with intellectual disabilities’ in the STOP #diabetes study holds lessons for us all
One of the things I feel incredibly fortunate about in doing my role is that people send me all sorts of interesting papers, articles, videos and other stuff. I do get round to looking at them all, although it can take me a bit of time. More often than not something will bubble to the surface … Continue reading A new paper on ‘involving people with intellectual disabilities’ in the STOP #diabetes study holds lessons for us all
A lab-based environment should be no barrier to public involvement in research #userinvolvment
I am often asked whether it is difficult - if not impossible - to involve the public in laboratory based research where researchers have limited or no direct contact with patients and the public. My answer is that it might be difficult but it can be done. And the benefits can be significant. The real challenges … Continue reading A lab-based environment should be no barrier to public involvement in research #userinvolvment
Blog: Being a Chair and why patients are just as good at it #researchgovernance
A head-hunter has written to me this morning - as they have to many others no doubt - asking whether I know of any good 'research' candidates to Chair a panel looking at research into patient and family experience. My first thought? To ask why the client thinks it's vital for someone with research experience … Continue reading Blog: Being a Chair and why patients are just as good at it #researchgovernance
Blog news: Life sciences giants join forces to promote young people’s involvement in health research
Some of the leading life sciences organisations in the UK have joined forces to issue a 'statement of aspiration' about the involvement of young people in research saying: 'Collaboration between young people and commercial researchers should become an established and normal way of working. Learning from this collaboration should be actively translated wherever possible to … Continue reading Blog news: Life sciences giants join forces to promote young people’s involvement in health research
A town hall meeting in Camden held a mirror up to public engagement British style and it wasn’t pretty
I was at Camden Town Hall on Monday night with a couple of hundred other citizens. We came together to talk about clinical research and I got a real kick out of it. The occasion was the first ever 'Clinical Research Education Event' held in the UK by the American non-profit organisation, the Centre for … Continue reading A town hall meeting in Camden held a mirror up to public engagement British style and it wasn’t pretty
Blog: Have you ever knowingly been oversold PPI in research? Then, there’s help at hand #howtoinvolve
I didn't think so. Do you get those nagging calls about PPI? It's usually early evening. Sometimes it is a recorded voice message. Sometimes a text. Very occasionally it is a real person from the unreal environment of a call centre. Unfortunately they are all contacting me about that other PPI - yes, Payment Protection … Continue reading Blog: Have you ever knowingly been oversold PPI in research? Then, there’s help at hand #howtoinvolve
Patients wanted to talk about public involvement in surgical trials #PIRRIST @joannacrocker
I've been helping colleagues get this study off the ground so would appreciate your help either in spreading the word or by contributing directly. As follows. ....Are you currently involved in a surgical research trial? If so we need your help! We are looking for patient or lay advisers, partners or representatives to take part … Continue reading Patients wanted to talk about public involvement in surgical trials #PIRRIST @joannacrocker
There’s nothing wrong in being a poster child for public involvement @bournemouthuni
The small things in life can tell us much about how the world is changing. Whether it's commuters carrying bottles of water. Or the papers left on trains at the end of a journey. What might such tell-tale signs of cultural change be, when it comes to public involvement? Is it the fact that public involvement … Continue reading There’s nothing wrong in being a poster child for public involvement @bournemouthuni
From ‘spacewalking’ patients to Bowie, the literature on public involvement in research reached new Peakes this week
It's one of the hardest things they will have to do. It is physically and mentally draining. For many it will feel a lonely place. The atmosphere will be unlike anything they have ever experienced before. Some will feel as if they are in a state of suspended animation. Others will feel as if they have leapt off a cliff … Continue reading From ‘spacewalking’ patients to Bowie, the literature on public involvement in research reached new Peakes this week
Simon Denegri's Lay Review 