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 NIHR publishes latest data on patient experience in research, provides patient pathway to study success @NIHRCRN @NHSRDForum #clinicaltrials
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 ‘Sticking with it’ – retention issues in public involvement and health 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 National cancer patient survey raises more questions about patient access to research
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 Have you joined the new online course revolutionising the way the public can learn about clinical research? @NIHRCRN MOOC
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 From ‘spacewalking’ patients to Bowie, the literature on public involvement in research reached new Peakes this week
Hot off the presses: Almost a year to the day that the Director General Research and Development/Chief Medical Officer commissioned a strategic review of public involvement in the National Institute for Health Research (NIHR), the final report and recommendations have today been published. Simon Denegri, the National Director for Patients and the Public in Research … Continue reading Review of public involvement in NIHR published #ppiextramile
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 Is it time to give patients the opportunity to self-refer themselves to take part in NHS research?
Forgive me. For once, I write with a semi-official hat on. But this afternoon feels like a bit of a milestone moment in lifting public involvement in research ever higher on people's agendas. If you have heard me speak in public then you will know I start by saying how proud I am that the … Continue reading NIHR gives ‘chapter one and verse’ on patients and the public in research: 2012/13 annual report 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 It’s NIHR Friday: NHS Trust research activity stats published
Recently I decided to 'Follow' as many of the NHS organisations (Trusts, CCGs etc) as I could find on Twitter. The main reason was that as we ratchet up what we do around the patient access to research agenda in the New Year, I thought it would be good to begin to make connections on … Continue reading Research in the NHS: I couldn’t put it better than Cumbria Partnership NHS Trust
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 Cancer patient experience survey results show variations in access to clinical trials and research
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 Clinical trials activity report for England highlights progress but much work still to be done
It's that time of year again to get your local NHS Trust to enter this year's Health Service Journal (HSJ) 'Progressive Research Culture' Award. This follows the success of last year's award which saw over 40 Trusts enter. Further details from the NIHR CRN CC website. I'm delighted that the nine criteria include these two: - Evidence of … Continue reading HSJ ‘Progressive Research Culture’ Award 2012: Open for entries
So it was an early start for me today, doing radio interviews for International Clinical Trials Day today. I'll post the links to one or two when available. Here's the press release from NIHR CRN which was the news peg for the interviews. NEWS RELEASE TEXT (HEADLINE AS ABOVE) The results of a new survey, published on … Continue reading Survey raises questions over NHS research
The Academy of Medical Sciences (AMS) today published its report of the meeting it held a few months ago, looking at progress with improving the regulatory of environment for medical research. I blogged about being a panellist at the meeting as you may recall. The report's conclusions are noteworthy for the second bullet point about public … Continue reading The Academy reports on research regulation…and a reminder of the Guardian’s Q&A about public involvement
'Pedestrian freight.' It is a term I had not come across until last week. I believe it is the phrase once used inside train companies to describe you and I, the commuters who throng with fortitude through our stations up and down the land every day. Perhaps it still is, I don't know. Such 'internal' phrases can … Continue reading We need more than better chat-up lines to increase participation in research
Returned from half-term leave today thinking that I might write about the latest Care Quality Commission (CQC) patient experience survey. After a while looking at the results I began to think: is there a good reason why there isn't a patient 'out of body experience' survey conducted and published? It might come closer to the … Continue reading NHS research up close and personal: ‘Research People’ site tells the stories behind the story
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 BMJ talks tough on clinical trial data and the public interest
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 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?
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 In defence of the clinical trial patient: a health research ombudsman?