Actually that's not quite true because, as is not uncommon with these things, the evidence session I attended today was more of a discussion, and a very good one it was too. But I did more or less cover the following points. At the end we were asked to express one wish about what happens … Continue reading My key points to the ‘Caldicott 2’ Review of Information Governance earlier today
Author: simondenegri
The NHS Commissioning Board Draft Mandate and patients in health research
The Shard went up (officially). And the NHS Commissioning Board Draft Mandate came down from on high. All on the same day. Add the odd torrential downpour with its associated misery and these could be Biblical times. I have come to the conclusion that it is my fate to be locked away somewhere remote and with an intermittent … Continue reading The NHS Commissioning Board Draft Mandate and patients in health research
PLoS ONE study – I’d go further: poor quality information undermines rights of clinical trial participants
On my recent visit to Newcastle, my afternoon was spent talking to, and answering questions from, the public about research. Clinical trials featured heavily. The most common theme was their frustration over the poor quality information given to trial participants before, during and after a trial had finished. The journal, PloS ONE, has today published a … Continue reading PLoS ONE study – I’d go further: poor quality information undermines rights of clinical trial participants
Guest blog: update on public engagement at ‘The Crick’
Some time ago I invited John Davidson, Communications Director at the Francis Crick Institute, to send a piece about their public engagement activities and plans. This is what he sent me earlier this week. It seems somehow fitting with a weekend upon us...... ......There will be large queues waiting patiently but excitedly outside the site … Continue reading Guest blog: update on public engagement at ‘The Crick’
‘Caldicott 2’ Evidence gathering session on research – ‘patients and the public’ questions
'Caldicott 2' is the health and social care information governance review being conducted by Dame Fiona Caldicott with a due date for completion this autumn. The title of the review is 'Information: to share or not to share?' I passed by the official website today and noticed that it now has a huge amount of information … Continue reading ‘Caldicott 2’ Evidence gathering session on research – ‘patients and the public’ questions
Pfizer undaunted by social media hurdles in clinical trial recruitment
This was reported last week in the US press but I have not seen it covered here in the UK. Pfizer has reeled-in its social media strategy for recruiting patients to a US clinical trial of over-active bladder drug, Detrol. But it hopes to come back next year with a renewed 'virtual trial strategy.' In the meantime … Continue reading Pfizer undaunted by social media hurdles in clinical trial recruitment
New science networks herald more fertile ground for health innovation
If contemplating NHS change rest assured, and this from one who once visited Mt Etna, that the lava does solidify, some old structures do survive, and it is possible for new ones to be built with solid foundations. Herewith some new and some not so new 'kids' on the block in the world of research. … Continue reading New science networks herald more fertile ground for health innovation
Double whammy by INVOLVE: new resources on diversity and inclusion in public involvement, and impact on research conduct
INVOLVE has published two fabulous resources on some current hot topics in public involvement in research: Strategies for diversity and inclusion in public involvement – this is a supplement to our briefing notes for researchers Public involvement in research:impact on ethical aspects of research – this resource provides examples of the impact of public involvement in the … Continue reading Double whammy by INVOLVE: new resources on diversity and inclusion in public involvement, and impact on research conduct
The life sciences, the public and the growth agenda…its not just about bums on seats
This is an extract from a talk I gave on Monday to the Faculty of Medical Sciences at the University of Newcastle. I tried to answer the following question: The life sciences are seen as fundamental to the nation’s health and to economic growth. But what is the public’s role in making this happen? The … Continue reading The life sciences, the public and the growth agenda…its not just about bums on seats
Oldham CCG’s Fairness Commission – one approach to public involvement in the new NHS
I hadn't seen this before...no doubt I am one of the last, as usual. It is an article by Dr Ian Wilkinson, the accountable officer for Oldham Clinical Commissioning Group (CCG), which appeared in Pulse magazine. He describes their approach to public involvement with particular reference to the establishment of a 'Fairness Commission.' The Commission's report can … Continue reading Oldham CCG’s Fairness Commission – one approach to public involvement in the new NHS
Are you a patient? Then, I’m holding you for questioning. You have the right to…..
Just in case you had missed it, it's all about patient experience from now on! And a good thing too. Or, at the very least, it seems the intention is to ask people more questions about their experience. A lot more questions in fact. In the new world, I wonder, will we be met by NHS 'chuggers' … Continue reading Are you a patient? Then, I’m holding you for questioning. You have the right to…..
HSJ ‘Progressive Research Culture’ Award 2012: Open for entries
It's that time of year again to get your local NHS Trust to enter this year's Health Service Journal (HSJ) 'Progressive Research Culture' Award. This follows the success of last year's award which saw over 40 Trusts enter. Further details from the NIHR CRN CC website. I'm delighted that the nine criteria include these two: - Evidence of … Continue reading HSJ ‘Progressive Research Culture’ Award 2012: Open for entries
Have we pushed pharma too far away?
I must confess, the idea of a 'breakfast roundtable' discussion is about as appealing to me as hoovering. Come to think of it the two activities are not unrelated. For roundtables are really an opportunity for the host to hoover up lots of comments and ideas. My sympathy always goes to the poor person who … Continue reading Have we pushed pharma too far away?
Forget the pyrotechnics it’s all about shopper experience when it comes to public engagement in research
I am on the train to Brighton to attend the Association of British Neurologists (ABN) annual conference. Whenever I travel this line I always think of that old film they used to show when I was a boy, of London to Brighton in 2 minutes. Such is the age we live in, and the raised … Continue reading Forget the pyrotechnics it’s all about shopper experience when it comes to public engagement in research
Consortium publishes new principles for transparency in clinical trials/The Guardian debate on public engagement in research
So, this has been fairly well-reported already. But in a show of my utmost commitment to the transparency agenda here is a link to the news release on the Royal College of Physicians (RCP website) about yesterday's launch by the Ethical Standards in Health and Life Sciences Group (ESHLSG) (a consortia of professional, medical and commercial … Continue reading Consortium publishes new principles for transparency in clinical trials/The Guardian debate on public engagement in research
In 2013 we want every hospital to be doing this on International Clinical Trials Day…
This from the Dorset Echo about Dorset County Hospital's very simple approach to promoting the importance of taking part in clinical trials on International Clinical Trials Day yesterday. Happy to post other examples if people have any.
Smart guides to public and patient involvement in your local NHS (i.e. Healthwatch, CCGs etc)
Here are four exceptionally useful guides to ensuring good public and patient involvement and engagement in the new local NHS structures such as Healthwatch, CCGs etc. Get smart about engagement series introduction Engagement for commissioning success Working with lay members and patient representatives Working with LINks and local HealthWatch My sense is that CCGs are … Continue reading Smart guides to public and patient involvement in your local NHS (i.e. Healthwatch, CCGs etc)
Details of The Guardian live Q&A on public engagement in research now available
The Guardian has just put up on its website details of the live Q&A about public engagement in research that it is holding at lunchtime on Thursday 24th May (that's this week). Good line-up for the panel and rather excited about it. The link above also includes details of how to follow the discussion live … Continue reading Details of The Guardian live Q&A on public engagement in research now available
Survey raises questions over NHS research
So it was an early start for me today, doing radio interviews for International Clinical Trials Day today. I'll post the links to one or two when available. Here's the press release from NIHR CRN which was the news peg for the interviews. NEWS RELEASE TEXT (HEADLINE AS ABOVE) The results of a new survey, published on … Continue reading Survey raises questions over NHS research
Thoughts on public involvement, participation and engagement in research…from Denmark
Those of you who follow me on twitter (and you can do so by clicking on the twitter symbol on the blog), will know that, earlier this week, I was tweeting from Copenhagen in Denmark. Myself and Derek Stewart, Associate Director for PPI at NIHR CRN CC, were there to help launch the Danish Health … Continue reading Thoughts on public involvement, participation and engagement in research…from Denmark
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