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
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
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
You probably don't need to hear another thing about the EU, do you? (By the way what a terrible EU referendum campaign it is - have you ever heard such hyperb******s from our politicians?) But this really is a good thing. Following the passage of the new EU Clinical Trials Regulation, the European Commission has started … Continue reading EU issues draft guidelines on providing clinical trial results so you and I can understand them #clinicaltrials
My tickets for the FA Cup Final arrived in the post yesterday. I am very excited indeed. I have a feeling that my team will bring the trophy home to south London where it belongs. It is that time of year when football fans are living on their nerves as their team battles to win … Continue reading ‘Stand up if you love clinical research’ on Intl Clinical Trials Day, 20 May #NIHRoktoask #NHSresearch
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
We are the only country which runs a public awareness campaign across our national health system to encourage people to participate in clinical research - NIHR 'OK to ask'. We've been doing it for three years on the trot to coincide with International Clinical Trials Day (ICTD) in May. Now we want your views on how … Continue reading We are looking for feedback on the #NIHRoktoask campaign from patients, researchers, everyone…. Please help and RT.
'Purdah' will very shortly fall over Whitehall as the General Election looms. At the end of March the airspace over government will be closed for six weeks or so. No new flights of Ministerial fancy can take off. Those already in the air may continue on their way but must do so in radio silence. Still, … Continue reading Old rules need not apply – Is Apple tearing up the rule book with #ResearchKit?
What should we make of the latest figures from INVOLVE and the Health Research Authority (HRA) showing which funders are best at public involvement in research? In a re-run of an joint-exercise first done in 2010, INVOLVE and the HRA looked at the public involvement component of over 1100 research applications that went before research ethics … Continue reading Who are the good, the bad and the ugly at involving the public in medical research? New comparative figures for Government, charities and industry
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?
Today sees the annual Cancer Patient Experience Survey published. For the third year running it looks at the extent to which people with cancer are being told about the opportunity to take part in research. Also, how many take up that opportunity. National data is published and then statistics are provided by NHS Trust and … Continue reading Cancer research ‘sales’ to patients remain flat
On New Year's Eve I took my family up 'The Shard,' London's newest and tallest landmark. As we looked Eastwards a squall was readying itself over the North Downs; the latest in a succession of storms to batter our shores over the past few weeks. Low-flying clouds threatened to swallow us whole. The wind roared around … Continue reading Even pharma must understand the perils of Schwanning about in a storm
I once wrote an article for a local rag bemoaning the state of the town's railway station. When, two days later, the council announced plans for its complete redevelopment I expressed my shame and guilt to a friend for not having known this. "Simon," he said after a long pause, "it sounds like a simple case … Continue reading UK Clinical Trials Gateway (UKCTG) now shows open trials by location in early Xmas stocking filler for patients
It's going to be a 'big-ish' month in the EU for clinical trials. By most accounts, EU legislators will reach a compromise agreement on the proposed new Clinical Trials Regulation in time for Christmas. The key focus for industry bodies is around making sure the legislation embraces aggressive timelines for the approval of clinical trials. Remind me, isn't … Continue reading Big month in Brussels for clinical trials…but let’s not be hasty
Promoting Clinical Research Activities and Opportunities Locally – From OK to Ask to Research Changed my Life Mark Terry, Research Office, Royal Brompton & Harefield NHS Foundation Trust (firstname.lastname@example.org) 2013 has been notable for the strong momentum provided by National Institute for Health Research (NIHR) to NHS Trusts in our efforts to raise awareness of … Continue reading @RBandH Guest blog: Promoting Clinical Research Locally – From ‘OK to Ask’ to Research Changed my Life
So here's something to make your crumpet and jam just a bit more palatable on Sunday afternoon...Thanks to NIR CRN. This week Health Sector TV will be broadcasting a programme entitled ‘Clinical Research: Making Patients and the NHS Better.’ The blurb says that this is 'an important new documentary highlighting how the Clinical Research Network (as … Continue reading Exclusive preview! UK clinical research gets its own TV show…..Downtown eat your heart out @NIHRCRN
Not for the first time I was awake at 3am this morning. Cup of tea in hand, watching American football. It's amazing how those players keep the ball when so many other players are piling on top of them. Rarely do you see the thing break free. They must practice for hours.... The House of Commons … Continue reading Do I detect a slight fumble of the ball in today’s Commons Select Committee report on clinical trials?
I hope you'll forgive the fact that what follows is the news release but I am part of the team presenting with Jonathan Sheffield at next week's British Science Festival and I really couldn't put it better than this. The 'live trial' is very exciting indeed and the first dip in the water for a … Continue reading Take part in a live trial now as part of NIHR’s visit to the British Science Festival #NIHRCOMETtrial