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
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
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
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
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?
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 … Continue reading 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 … Continue reading It’s NIHR Friday: NHS Trust research activity stats published
The public might just be on the verge of getting the sort of health research regulator they need and deserve. Yesterday the Health Research Authority (HRA) published its plans for promoting transparency around publication of health research findings. Of particular note from a public and patient perspective is its proposal to: 'set standards and issue … Continue reading Research transparency: HRA shows a cool head where others fear to tread
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 … Continue reading 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 … Continue reading New websites launched for people looking to join a clinical trial; but will patients want a ‘coming together’ at some point?
The Organisation for Economic Co-operation and Development (OECD) yesterday waded into the increasingly feverish debate about the regulation of clinical trials with a strongly worded recommendation calling on its members to harmonise approval processes. The recommendation which is worded with the minimum of fuss, is backed by a more detailed explanatory memorandum. But I am … Continue reading OECD wades into clinical trials debate, but statement on public involvement goes awol
This evening I have been reading a fascinating report about women with ovarian cancer and their access to clinical trials. Last week, Target Ovarian Cancer published the results of their 2012 Pathfinder Study. It is an excellent piece of work. What I like about it is that it digs around issues to do with choice … Continue reading Charity right on Target with patient insights on clinical trials: where are the others?
This is already doing the rounds on twitter but I thought I would share the email/letter that I have sent out to those who took part in the survey.... I am pleased to let you know that the results of the UK Clinical Trials Gateway (UKCTG) Patient and Public Survey conducted last summer have been … Continue reading Public have their say on clinical trials gateway
Earlier this week Patient View published the results of its annual tracker of the pharmaceutical industry's reputation among patient groups. The latest study surveyed 600 patient groups (72% of them from Europe). As well as asking patient groups to rank 29 pharmaceutical companies by various indices (such as whether their practices were patient-centred) - Lundbeck … Continue reading Patient View Report: Pharma industry’s lack of transparency harming reputation with patients
The European Medicines Agency (EMA) has published the note of the conference held in London a few weeks ago, about its plans for proactive publication of clinical trial data. It is now setting up five advisory groups and inviting self-nominations from people to join these. You will find the following listing of the advisory groups, plus … Continue reading Patients need apply – European Medicines Agency (EMA) next steps on clinical trial data