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
public involvement in research
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
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
The post-Brexit liberalisation of #clinicaltrials could be the way to a bolder ambition for the UK
There is much post-Brexit talk of using our new-found political independence to liberalise clinical trials in the U.K. We can cut ourselves free of all that terrible EU red-tape that has weighed us down. Or so the argument goes. We can be quicker and more efficient than other countries. We will be more attractive to … Continue reading The post-Brexit liberalisation of #clinicaltrials could be the way to a bolder ambition for the UK
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
Patients and the public are vital to science’s role in a post #Brexit Britain. A response to Pfizer’s MD, Erik Nordkamp
I do try to live up to my Tunbridge Wells postcode by firing off regular 'disgusted' letters to the press and, in particular, The Daily Telegraph (DT). On Monday Erik Nordkamp, Pfizer's Managing Director, wrote this article about the importance of the life sciences industry to a post-Brexit economic strategy. So I sent this to … Continue reading Patients and the public are vital to science’s role in a post #Brexit Britain. A response to Pfizer’s MD, Erik Nordkamp
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
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
The devil’s in the manual – health research regulation and public involvement @HRA_Latest
When I was growing up I used to help my Dad do DIY around the house. Our perennial companion was a thick, hard-bound manual with step-by-step guides on how to do anything and everything. No job was too big or too small for it. From replacing a chimney stack to changing a plug. Dad passed … Continue reading The devil’s in the manual – health research regulation and public involvement @HRA_Latest
There is indeed method in our ‘madness’ – being METHODICAL about public involvement
Polonius: [Aside] Though this be madness, yet there is method in't. Hamlet Act 2, scene 2, 193–206 If you are in some way connected to public involvement in health research then you get used to 'the look.' Sometimes it's a vacant stare or a gaze falling slowly across the face like the sun going down. In other instances … Continue reading There is indeed method in our ‘madness’ – being METHODICAL about public involvement
Patients and researchers – sparring partners not hostile combatants
I am in Helsinki, Finland, for a few days this week, sitting on a review panel for the 'Joint Programme - Neurodegenerative Disease Research.' It is the first time that this programme has involved patients in its review process for funding research so it feels a bit of a milestone moment. This, after twelve months, of … Continue reading Patients and researchers – sparring partners not hostile combatants
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 … Continue reading The divide between public involvement in research and service delivery
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 … Continue reading Going commando in public involvement in health research
Simon Denegri's Lay Review 