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 … Continue reading 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 … 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
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 … Continue reading It’s NIHR Friday – Public involvement: did the research network move for you?
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
So here's my unsubstantiated personal theory. It is that one of the root causes of the problems besetting today's NHS' is our failure to pay proper heed to the growing crisis in accountability and responsibility that has been a feature of our increasingly complex health system over the last seventy years. From almost the day … Continue reading A bit of a public involvement mash-up including that idea for an NHS Civil Society Assembly
It being half-term you can never have enough travel games on hand. Current favourites for me are: a) guessing who will be the new Director of the Wellcome Trust and; b) thinking of a name for the body created if you merged all the current Research Councils into one. I did apply for the former … Continue reading ‘Best left alone’ is not the motto we want for our health regulators
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
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
With the sort of timing which makes me wonder whether I missed my vocation as a TV scheduler it only seems right that, on the day the House of Commons Science and Technology Select Committee has announced its inquiry into access to clinical trial data, I should ask you to road-test 'TestingTreatments interactive.' 'Testing Treatments interactive' is the … Continue reading Testing, testing: please put Testing Treatments interactive through its paces
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…
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
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
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), 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