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 →

Monday musing: Is ‘likeness’ or ‘character’ more important when writing a lay summary in research? #sciencecommunication

Last week I was sent a research application to look at. The proposal was complex. I read the lay summary once. I read it twice. In fact, I read it three times. I was still none the wiser. I realised that all the jargon, terminology, clauses and sub-clauses in the scientific overview had been condensed into... 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 →

When patients help bridge the knowledge gap in health research #clinicaltrials #whywedoresearch #PROMs

This week saw a great editorial by Angela Coulter in the British Medical Journal (BMJ) headlined 'Measuring what matters to patients.'  The underlying story may be summed up as follows. The effectiveness of the care or medicines you and I receive every day has been decided by measuring the things that health professionals and researchers have decided are important. Some of these 'measures'... Continue Reading →

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 →

Trump is coming between good science and its citizens. We – the public – must not let it happen.

It's not just the borders of Mexico where Donald Trump is building walls. A fence is going up around science too. In his first few weeks in office the US President and his White House staff imposed a media black out on the federal Government funded Environmental Protection Agency (EPA), put a freeze on new... Continue Reading →

Let’s follow #DryJanuary with a concerted effort to research patient priorities in alcohol-related liver disease @LindAlliance

This blog by me was first published on the National Institute for Health Research (NIHR) prior to Christmas to coincide with the publication of the James Lind Alliance Priority Setting Partnership on alcohol-related liver disease. But yesterday's report by Public Health Wales showing that thousands of people who die from alcohol related problems had no... 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 →

‘Risk is in the eye of the beholder’ and other patient stories not to be swatted

Fighting is for fundraisers I won't be the first or the last person to remark on the misappropriation of fighting talk when discussing ill-health. We don't 'fight' cancer, dementia, the aftermath of a stroke or mental I'll-health. No, what we actually do is fight all the things around it. We fight to get to see... Continue Reading →

Any notions that power shifted massively to patients in 2016 are a fantasy worthy of a snow globe, take it personally from me

I was digging about in my garage the other day and found an old snow globe. I am afraid I have always found these ornaments - the mainstay of souvenir shops across the world - something of a disappointment. Give them a good shake and there's a briefly pleasing fall of artificial snow before it... Continue Reading →

The Twelve Days of Christmas….public involvement in research style #HaPPIChristmas

To the tune of....it just about works with some sherry or a shot of caffeine... On the twelfth day of Christmas my true love sent to me: More health research All research published Easy public access Patient insight valued Patient need prioritised   Patient outcomes measured Training and help given A BOLD PPI strategy........ Don't forget... Continue Reading →

Behind the headlines: New Dementia Research Institute involves people with dementia and carers from the start

If you are anywhere near a radio or television today then it is likely you will hear about the new UK Dementia Research Institute which is being created to step up the fight against dementia. The £250M Institute - a partnership between the Medical Research Council (MRC), Alzheimer's Society and Alzheimer's Research UK - will... Continue Reading →

Science Select Committee looks to public to set its agenda #MyScienceInquiry

Let's hear it for the House of Commons Science and Technology Select Committee. In fact I take back all the things I was thinking a few weeks ago (probably unfairly) about it being ponderous, having too many on-going inquiries (16 at the moment  I think) and only ever hearing from the great and the good. The Committee... Continue Reading →

PPI-nch, punch, 1st day….science has pulled a £2bn rabbit out of the hat. Now it must involve its citizens to spend it where it’s needed. 

Pinch, punch, first day of the month. What better day to celebrate some 'firsts' that we have seen in public involvement and engagement this week? To begin with, the excellent 'Patients First' conference on Monday hosted by the Association of Medical Research Charities (AMRC) and the Association of the British Pharmaceutical Industry (ABPI). It's the... Continue Reading →

No democracy without evidence, no evidence without democracy #evidencematters @senseaboutsci #Brexit #Election2016

Democracy and all who sail with her have been getting a fair old battering. Another storm blew in with yesterday's US Election results. 'Democracy is in tatters' I heard one commentator say. What rubbish. Democracy has served up exactly what we have designed it to do. That design may be imperfect but we have only... Continue Reading →

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 →

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 →

Hospital parking charges and wheelchairs: examples of why ‘customer service’ shouldn’t be a dirty word in the NHS

We learnt today learnt today that a third of hospital trusts have increased their car parking charges in the last year and that the average rise among this group was around 15%. I have had cause to use my hospital a lot over the few months as my Dad is recovering from a stroke. Car... Continue Reading →

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