Privacy campaigners have reacted with concern to the announcement by Health Secretary, Matt 'Prime Membership' Hancock, that the NHS and Amazon have done a deal to provide health advice through its Alexa smart speakers. The concerns need addressing although I feel a lot more chilled out about it than some of the things Alexa already … Continue reading A conversation with Alexa about public involvement in health – ‘Sorry, I don’t know that one.’ #digitalPPI
Clinical trial
UK Clinical Trials Gateway (UKCTG) now shows open trials by location in early Xmas stocking filler for patients
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
CMO as good as her word on young people’s involvement in research
The Chief Medical Officer, Professor Dame Sally Davies, published her annual report today. Actually, it's two reports. The first is the usual state of the nation summary of the population's coughs and splutters. The second, uniquely this year, looks in depth at the worrying lack of attention we have paid to young people's health. It's … Continue reading CMO as good as her word on young people’s involvement in research
Do I detect a slight fumble of the ball in today’s Commons Select Committee report on clinical trials?
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?
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 It’s NIHR Friday: NHS Trust research activity stats published
The ageing of consent in clinical research
'I would like to know what I want to know' - a participant-led approach to giving consent to taking part in clinical research
1-HELP-CUREIT
It was so humid when I stepped onto the sidewalk it felt like I was treading water. A threat of storms hung in the air, battleship colour clouds steaming slowly across the horizon. Far from here but menacing nonetheless. An occasional spot of rain found its way on to the floor; a steady hum of a/c … Continue reading 1-HELP-CUREIT
Now this is good, very good. The Cystic Fibrosis Trust has a transparent new research strategy
The Cystic Fibrosis (CF) Trust launched its new five-year research strategy in London yesterday. I have to say I am highly impressed. In terms of content and dissemination they seem to have single-handedly shown the rest of the medical research charity sector how to embrace the future as a funder and a patient group. Why is it … Continue reading Now this is good, very good. The Cystic Fibrosis Trust has a transparent new research strategy
Bold ambition for lung cancer research just what the doctor ordered
I was delighted to see this getting considerable airtime on the radio this morning: the launch of the London Lung Cancer Alliance with its aim of recruiting 3000 lung patients into clinical trials per year. Lung cancer is on the rise in the UK and it is a difficult condition for which to raise public awareness and … Continue reading Bold ambition for lung cancer research just what the doctor ordered
Political spotlight on Health Research Authority (HRA) intensifies
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
New websites launched for people looking to join a clinical trial; but will patients want a ‘coming together’ at some point?
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?
INVOLVE steps forward to change behaviours on plain English summaries of health research
I make no apology for being a little bit obsessed by plain English summaries of research this week. Events have conspired to make it this way. So, what did NIHR do when faced late last year with rising concern among academics, researchers, patients and the public about the poor quality of lay summaries? It commissioned … Continue reading INVOLVE steps forward to change behaviours on plain English summaries of health research
OECD wades into clinical trials debate, but statement on public involvement goes awol
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
Public have their say on clinical trials gateway
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
Patient View Report: Pharma industry’s lack of transparency harming reputation with patients
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
Help us make sense of the placebo effect…
I am involved in this follow-up study to one published a few months ago (and covered on this blog) about the poor information given to patients about the placebo in clinical trials. In the first instance the researchers are looking for people to input into the design of a leaflet. Details and contact email follows: … Continue reading Help us make sense of the placebo effect…
Patients need apply – European Medicines Agency (EMA) next steps on clinical trial data
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
At last! A patient-centred statement on the proposed EU Clinical Trials Regulation
First, a brief history of time in the Europe Union (EU). It goes slowly. That's it! For the last two years or so the European Commission has been consulting on plans to revise the European Clinical Trials Directive. The Directive has been in force since 2001. Researchers hate it. To be fair so do many … Continue reading At last! A patient-centred statement on the proposed EU Clinical Trials Regulation
Diabetes and cancer network reports on engaging people about clinical research and more…
My thanks to the Diabetes Research Network (DRN) for sending me their report 'Improving public awareness of clinical research.' Clinical research networks are at the 'front-line' in terms of encouraging people to take part in research and this report gives a good insight into some of the tools and strategies used by DRN. Others trying to … Continue reading Diabetes and cancer network reports on engaging people about clinical research and more…
Current Controlled Trials (CCT) appoints new advisory board
Current Controlled Trials (CCT), which aims 'to increase the availability, and promote the exchange, of information about ongoing randomised controlled trials worldwide,' has appointed a new advisory board to help it in its work. Other than yours truly, the Board includes Ben Goldacre and Paul Wicks (PatientsLikeMe) among its members, and is drawing on international … Continue reading Current Controlled Trials (CCT) appoints new advisory board
Simon Denegri's Lay Review 