The small things in life can tell us much about how the world is changing. Whether it’s commuters carrying bottles of water. Or the papers left on trains at the end of a journey. What might such tell-tale signs of cultural change be, when it comes to public involvement? Is it the fact that public involvement… Read More There’s nothing wrong in being a poster child for public involvement @bournemouthuni
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… Read More 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… Read More We are looking for feedback on the #NIHRoktoask campaign from patients, researchers, everyone…. Please help and RT.
Today’s rare foray onto the UK political scene by Tony Blair reminded me of a simpler time when politicians just used to repeat the same word three times for added emphasis. Or was it the daleks who used to do that? Funny how nightmares and the stuff of dreams can sometimes get confused in this way. Should either… Read More Blog: Consent, consent, consent…….new public dialogue report from @HRA_Latest
‘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,… Read More Old rules need not apply – Is Apple tearing up the rule book with #ResearchKit?
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… Read More 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… Read More 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… Read More 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… Read More 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… Read More @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… Read More Exclusive preview! UK clinical research gets its own TV show…..Downtown eat your heart out @NIHRCRN
I am in Alberta, Canada. I have been invited over to share the UK’s experiences in developing public involvement in research. As ever, it is the similarities and not the differences between our two experiences that strike you on a visit like this. More about those another time. My good friend, Derek Stewart, yesterday wrote an excellent blog with his… Read More Building ‘research active’ communities for a healthier population: a clear mission for CLAHRCs, AHSNs, LCRNs
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… Read More 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… Read More Take part in a live trial now as part of NIHR’s visit to the British Science Festival #NIHRCOMETtrial
You know how the story goes. Cancer is way ahead of other conditions when it comes to patients having the opportunity to participate in clinical research. But there’s still lots of room for improvement. Today NHS England has announced the results of the annual National Cancer Patient Experience Survey. Almost 70,000 patients took part in… Read More Survey: Cancer patients and research – the signage is there but not the opportunity to take part
Or should that be silly pharma…I don’t know. Yes, our colleagues from pharma have stolen the march on everyone else and got the silly season off to a grand old start. I am referring, of course, to the leaked memo from the European and American pharma trade associations dutifully covered by Ian Semple at The… Read More An unleaked memo on sorry pharma and the silly season
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… Read More It’s NIHR Friday: NHS Trust research activity stats published
NIHR Clinical Research Network Survey Patient and Carer (Lay) Involvement in Research: Your Experience The National Institute of Health Research (NIHR) Clinical Research Network (CRN) Patient and Public Involvement Steering Group is running a survey to capture how being involved in research impacts on patients and carers. You should take part in this survey if… Read More It’s NIHR Friday – Public involvement: did the research network move for you?
I am sure the new Health Research Authority (HRA) can take care of itself. But the expectations being heaped on it by others show no signs of abating. I wouldn’t be surprised if tomorrow someone calls on it to cure cancer. If it had been created by a Blair Government it would surely have been… Read More Political spotlight on Health Research Authority (HRA) intensifies
This week, patients got a couple more options for finding out about clinical trials they can take part in. Patientslikeme (which was launched in the United States a few years ago) has unveiled its new new clinical trials site which you can find here. Patientslikeme is capturing a lot of attention here in the UK… Read More New websites launched for people looking to join a clinical trial; but will patients want a ‘coming together’ at some point?