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…
Author: simondenegri
Details about ‘Rare Disease Day’ of Action – 28th Feb 2013
The following was sent to Rare Disease UK members and I thought I should pass it on as it explains what is happening and how you can get involved this year. All except the first link won't work as I am mobile but the first URL address will take you to where all this stuff is … Continue reading Details about ‘Rare Disease Day’ of Action – 28th Feb 2013
Prof Dame Sally Davies (CMO) talks about science communications, the media and public involvement
Rather than just tweet this as a link, I thought some background was needed. This is a ten minute extract of a much longer interview I did with Professor Sally Davies, Chief Medical Officer and Chief Scientific Officer at the Department of Health. The interview came at the beginning of a two-day NIHR training camp … Continue reading Prof Dame Sally Davies (CMO) talks about science communications, the media and public involvement
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
What year is it in public engagement in science? 1832 perhaps?
I find myself on another train. This time, returning from Bristol where the 'Engage' conference - run by the National Co-ordinating Centre for Public Engagement (NCCPE) is being held. In a nutshell NCCPE brings together the university sector. I was taking part in a morning workshop about what we have learnt from two decades of … Continue reading What year is it in public engagement in science? 1832 perhaps?
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
In the Hunt for a health Ofsted
The Secretary of State for Health, Jeremy Hunt, spoke at the King's Fund annual conference today. By all accounts it was impassioned and well-received. There then followed what sounded like a lively panel discussion about patient experience (see their twitter feed). Hunt's announcement of a review into the idea of establishing an 'Ofsted' rating system for hospitals … Continue reading In the Hunt for a health Ofsted
Novartis’ chocolate teapot arguments
According to the Daily Telegraph, Swiss drug company, Novartis, yesterday called a crisis meeting in London of its top execs, medical leaders and others. The Science Minister, David Willetts, was due to attend we are told. What was the purpose of this meeting? To read us all the riot act about the state of UK … Continue reading Novartis’ chocolate teapot arguments
Healthtalkonline looking for people to talk about their experiences of patient and public involvement
Healthtalkonline is looking for volunteers to be interviewed about their experiences of patient public involvement in research design and delivery. Flyer with contact details below.
Royal College looks to boost child health research with children’s charter
I am prone to beating up our Royal Colleges for one reason or another. But, over the last few years, I have grown to admire and respect the work of one of their number in particular - the Royal College of Paediatrics and Child Health (RCPCH). Yesterday, RCPCH launched a new report entitled 'Turning the Tide: … Continue reading Royal College looks to boost child health research with children’s charter
How do your taxes and donations get used to fund health research?
Today the UK Clinical Research Collaboration (UKCRC) has published its UK Health Research Analysis: http://www.ukcrc.org/ukcrc-health-research-analysis-2012/ The report shows spending by the 12 publicly funded health research bodies - including the largest charities such as Wellcome Trust, Cancer Research UK, BHF and Arthritis Research UK - in 2009/10. This is the second analysis to be published, … Continue reading How do your taxes and donations get used to fund health research?
Text of speech to INVOLVE 2012 – Public involvement in research: would you like that shaken or stirred?
Public involvement in research: would you like that shaken or stirred? So, ladies and gentlemen, there I was on Saturday afternoon, at the pictures, watching the new James Bond movie, ‘Skyfall.’ This was background research for today you understand; listening to Adele dolefully sing: ‘This is the end’ which is the opening line of the … Continue reading Text of speech to INVOLVE 2012 – Public involvement in research: would you like that shaken or stirred?
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…
Health Research Authority gets to work on speeding-up research
So there I was yesterday afternoon, with my biology 'o'level a distant memory to put it mildly, speaking at the annual NIHR Senior Investigators Meeting thinking: 'how did I ever get into this?' The event brings together the very best of NIHR's researchers for an update on what's happening across health research. And this was mentioned … Continue reading Health Research Authority gets to work on speeding-up research
And people wonder why we are so passionate about public involvement
There are a few minutes until I catch my train. It is just enough time to draw your attention to this excellent piece in the BMJ written by a patient, Matilda Hale, about her battle with fatigue as a result of liver disease, the complacency of the medical profession and the support she gained from … Continue reading And people wonder why we are so passionate about public involvement
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
Friday musings about tsars, conferences and stratified medicines
Today I started to think about the forthcoming INVOLVE national conference. More particularly, what I want to say to this important gathering in less than a month's time. This will be my first conference since taking over as Chair in June 2011 and, since then of course, I have also taken on the new National … Continue reading Friday musings about tsars, conferences and stratified medicines
Registration opens for Engage 2012: Responding to Change
Don't be put off by the fact that I'm speaking at one of these - my fellow speakers are great! The National Coordinating Centre for Public Engagement has launched registration for a series of specialist workshops targeted at organisations, professionals and members of the public who are passionate about public engagement. These workshops will take … Continue reading Registration opens for Engage 2012: Responding to Change
Australia launches new clinical trials website for consumers and it’s not as good as the UK’s (UKCTG)
We do beat ourselves up on a regular basis in this country. Sometimes appropriately. But often the punches fly a little too freely. Australia have launched a new clinical trials website today to boost patient recruitment. It has strengths. But it is not as good as our own UK Clinical Trials Gateway (UKCTG). For one … Continue reading Australia launches new clinical trials website for consumers and it’s not as good as the UK’s (UKCTG)
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