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
public involvement
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
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
Blog: An incident at 40,000 ft over the Atlantic highlights the perils of ‘evandigitalism’ in health care #digitalhealth
It was all going so well. My fears of spending eight hours on a budget airline from Ottawa to Nice were quickly subsiding. The plane was half-full. No one was sitting next to me. I could spread my things out. More importantly I could get to the loo at will. Most of my fellow passengers … Continue reading Blog: An incident at 40,000 ft over the Atlantic highlights the perils of ‘evandigitalism’ in health care #digitalhealth
Getting a GRIPP2 on public involvement reporting in research papers
More often than not, public involvement in research is poorly reported when it comes to the results of studies being written-up in academic papers. That means we - the public, researchers, clinicians and all others involved in doing research - are missing out on the cumulative knowledge and experience of others on 'why,' 'how' … Continue reading Getting a GRIPP2 on public involvement reporting in research papers
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
Patients are part of the crew in health research not passengers. This week you can support them by getting behind the #iamresearch @OfficialNIHR #ICTD campaign
It's a big week in research. To mark International Clinical Trials Day on Saturday 20th May, the National Institute for Health Research (NIHR) is promoting its 'I Am Research' (#iamresearch) national campaign to raise awareness of the part played by patients, carers and the public in making research happen. From today until well into … Continue reading Patients are part of the crew in health research not passengers. This week you can support them by getting behind the #iamresearch @OfficialNIHR #ICTD campaign
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
Today’s public involvement in health research t-shirt
I didn't know this but, apparently, the word 't-shirt' does not just refer to the summer garment. It can also be used to describe a very brief 'blog posting.' There, I bet you feel better for knowing that? Anyway, here's my washed, cleaned and ironed t-shirt for today. Later this afternoon I am speaking to … Continue reading Today’s public involvement in health research t-shirt
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
Understanding why people with rare diseases lose out on research may help those with other more common conditions @rarediseaseday
I once told a conference that it was my perception that rare disease communities were in a stronger position to put research at the top of the agenda; that patients, carers, clinicians and researchers found it easier to get around the table in these areas, were able to work more closely together and mobilise for … Continue reading Understanding why people with rare diseases lose out on research may help those with other more common conditions @rarediseaseday
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
Simon Denegri's Lay Review 