NIHR publishes latest data on patient experience in research, provides patient pathway to study success @NIHRCRN @NHSRDForum #clinicaltrials

Hats off to the National Institute for Health Research (NIHR) Clinical Research Networks who published the latest data on patient experience in research this week. They have now been tracking patient views on participation for three years and with each report we gain a more informed picture of what matters to them. And with the... Continue Reading →

‘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 →

National cancer patient survey raises more questions about patient access to research

The results of the National Cancer Patient Experience (NCPE) 2015 survey were published this morning.  It's an important insight into what people with cancer around the UK think about their care and treatment. For the last three years - and thanks to the tenacity of colleagues on the National Cancer Research Institute Consumers Liaison Group (NCRI CLG)... Continue Reading →

Have you joined the new online course revolutionising the way the public can learn about clinical research? @NIHRCRN MOOC

I do not ascribe to the view that you have to be 'scientific literate' as a pre-requisite to taking part in science.  In the same way that I do not think you need to be fluent in French before you can enjoy a holiday or set up home there.  Nothing beats immersion in the way of... 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 →

Is it time to give patients the opportunity to self-refer themselves to take part in NHS research?

Harpal Kumar, the Chief Executive of Cancer Research UK, yesterday posted a blog about the new task force he is leading for NHS England on cancer diagnosis.  The aim of the task force is to enable people to get an earlier and speedier diagnosis of their tumour in the future.  But it will also be looking at treatment and... Continue Reading →

It’s NIHR Friday: NHS Trust research activity stats published

You didn't think I'd forget NIHR Friday did you? So the National Institute for Health Research Clinical Research Networks Co-ordinating Centre (NIHR CRN CC), together with The Guardian online, has this week published its annual performance tables for research activity in each NHS Trust in England for 2012/13. You can find the figures for your local... Continue Reading →

Cancer patient experience survey results show variations in access to clinical trials and research

The results of the annual cancer patient experience survey are out today. For those of us committed to improving patient access to clinical trials and other research, this year's report is particularly interesting.  As far as I know, this is the first year that the survey asked patients whether taking part in research had been discussed... Continue Reading →

Clinical trials activity report for England highlights progress but much work still to be done

The National Institute for Health Research (NIHR) CRN CC has today published its clinical research activity report for the final quarter of 2011/12.  Some of the data and a good summary of what they mean is also available on The Guardian website. Last year was the first that this sort of information was made widely available.  So... Continue Reading →

BMJ talks tough on clinical trial data and the public interest

The BMJ publishes several papers today looking at the harm being done to research, patient care and the public interest by the incomplete disclosure or withholding of clinical trial data.  Click here for the BMJ's editorial  written by Dr Richard Lehman from Oxford University and the journal's clinical epidemiology editor Dr Elizabeth Loder.  An example of the... Continue Reading →

How’s your NHS Trust doing in the research league tables? Is Leeds the Man City of NHS Research? Does Bridgewater deserve the hairdrier treatment?

So NIHR CRN CC/The Guardian have today published a league table of how each NHS Trust is performing in research as defined by the number of research studies and the number of patients taking part.  I believe this is the first time such a table has been compiled and a thoroughly good thing it is... Continue Reading →

In defence of the clinical trial patient: a health research ombudsman?

Over a half a million members of the British public took part in clinical trials through the NIHR Clinical Trials Research Networks in 2010, a 24% increase on the year before.  Those are the Government's figures, not mine. Last week's 'life sciences' announcement included a range of measures to increase patient recruitment to trials.  These include... Continue Reading →

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