It is Rare Disease Day today, 28th February. There is a lot happening and you should check out the Rare Disease Day website for more info http://www.rarediseaseday.org/article/what-is-a-rare-disease . I've already been impressed by the number of NHS organisations tweeting about stuff they have got going on. Last week I attended a really great meeting on … Continue reading Notes from a ‘small island’ on Rare Disease Day
Author: simondenegri
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
AHSNs, CLAHRCs need to do a ‘Keanu’ and rearrange matter(s) in the public interest
So there I was, reclining on my sofa, recovering from the worst chest infection known to mankind. (Note deliberate reference to the male species there.) And I had decided to use my temporary ill-health to fill some gaps in my movie knowledge. Watching the MATRIX and MATRIX Reloaded it occurred to me that, faced with … Continue reading AHSNs, CLAHRCs need to do a ‘Keanu’ and rearrange matter(s) in the public interest
A bit of a public involvement mash-up including that idea for an NHS Civil Society Assembly
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
‘Best left alone’ is not the motto we want for our health regulators
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
Charity right on Target with patient insights on clinical trials: where are the others?
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?
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
I’ll be honest, I’m in two minds about the Royal Institution (RI) issue.
Last week news broke that the Royal Institution (RI) is looking for buyers for its hallowed Albermarle Street headquarters in London as part of a plan to ease its financial woes. These amount to £7million owed to creditors according to various reports. There's plenty of coverage of the affair in the UK media and a campaign … Continue reading I’ll be honest, I’m in two minds about the Royal Institution (RI) issue.
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
Blog: How the painter’s brush can help us see the person behind Alzheimer’s disease
We were decluttering the flat this morning and I came across this picture. It had been on my boys' bedroom wall until it was replaced by a Crystal Palace FC 2013 calendar a few weeks ago! In the late nineties I was living in the United States. Off and on, I volunteered for the Cincinnati … Continue reading Blog: How the painter’s brush can help us see the person behind Alzheimer’s disease
How your NHS Trust works in mysterious ways when it comes to clinical research
Today the NIHR Clinical Research Network Co-ordinating Centre (NIHR CRN CC) has published the results of a 'mystery shopper' exercise it conducted last year to investigate how well NHS Trusts provide information about clinical research. You may have seen a piece in last Sunday's Observer which trailed this work and you may hear about it … Continue reading How your NHS Trust works in mysterious ways when it comes to clinical research
Reminders that this patient experience malarkey is a serious business
I don't know about you but I'm nervously awaiting the results of my 'family and friends test' from Christmas and the New Year. I was feeling ok about it. Then a friend of mine suggested a good result may not be a 'good result' at all: it might actually be a perverse and calculated attempt by my nearest and … Continue reading Reminders that this patient experience malarkey is a serious business
Getting back into the (regulatory) swing…..
After two weeks away, this feels like the proverbial two minutes from time substitution that players do when coming back from injury. Just to be sure we remember which goal we are attacking, mind. I have a feeling that 2013 will very much be a year about how we regulate health research in the future. More … Continue reading Getting back into the (regulatory) swing…..
Research in the NHS: I couldn’t put it better than Cumbria Partnership NHS Trust
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
Data, data everywhere…new report, plus NIHR’s achievements in 2012
Yes, we are positively swimming in data these days. And I don't about you, but I'm looking forward to doing some data-linkage with family and friends over Christmas and the New Year. From a Government point of view, making best use of the data which is routinely collected by departments, public agencies and others, linking … Continue reading Data, data everywhere…new report, plus NIHR’s achievements in 2012
Revised Science and Society Vision: A step forward?
I am in Denmark on a study visit looking at how they do innovation. More on that in a few days time I hope. In the meantime colleagues at the Department for Business, Innovation and Skills (BIS) sent me through the link to their revised vision, aims etc which was published on their website last … Continue reading Revised Science and Society Vision: A step forward?
Are you a weekend or 24/7 patient group?
So there we would be, my 'punk' friends and I, lapping up the attention of tourists in Trafalgar Square, and hopefully but all too rarely their loose change as well. Come Monday of course, we would return to the uniformed anonymity of school. Our rebellious ways no more than a felt tip scribble on our … Continue reading Are you a weekend or 24/7 patient group?
Testing, testing: please put Testing Treatments interactive through its paces
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
Comment piece: New mental health research charity springs from an unlikely quarter #mentalhealth
It has been in the works for a not inconsiderable amount of time. A slow burner if you like. So it somehow seems fitting that the first flames should flicker almost unnoticed. Yesterday, Research Fortnight's Adam Smith wrote about a new mental health research charity to be launched next year with a hefty £20 million … Continue reading Comment piece: New mental health research charity springs from an unlikely quarter #mentalhealth
Writing competition open for entries – win an iPad and article in eLife #A2UComp
And if you already have one you can always re-gift it (to me)! This is a new science writing competition for researchers and I shall be one of the judges I am delighted to say. The 'Access to Understanding' writing competition for bioscience researchers has been launched by Europe PubMed Central and The British Library … Continue reading Writing competition open for entries – win an iPad and article in eLife #A2UComp
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