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 →

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 →

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 →

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 →

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 →

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 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 →

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 →

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 →

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