I'm always very chuffed when people ask for a copy of my presentations after a talk. Usually I am quite good at emailing them to people or asking the organisers to send them round. Anyway, I have done a lot of meetings lately and thought I would post here copies of my slides from the … Continue reading @SDenegri presentations about the public and health research from Leicester, HSRN and Leeds
clinical research
It’s NIHR Friday – Public involvement: did the research network move for you?
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?
Blog: Why the NIHR Journals Library is important from a patient perspective
NIHR Journals Library Launch 20th June 2013 As promised here's my speaking notes from the launch of the NIHR Journals Library today. Good to see the Minister, Earl Howe, there (I tweeted his remarks earlier) plus the CMO, Professor Dame Sally Davies, Trish Edwards, Asst Editor from the BMJ etc., Public involvement in UK health research … Continue reading Blog: Why the NIHR Journals Library is important from a patient perspective
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
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
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
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
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
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
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
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
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…
GSK’s Witty remarks are easy to swallow from a patient perspective but the rest of the flock must follow
I spoke at the Clinical Discovery 2012 conference yesterday about the future value and impact of clinical research. This is one of a number of similar events I've presented at over the last month or so. On reflection there generally seems a more 'upbeat' conversation among conference-goers about clinical research in the UK compared to this time last … Continue reading GSK’s Witty remarks are easy to swallow from a patient perspective but the rest of the flock must follow
Cancer patient experience survey results show variations in access to clinical trials and research
The results of the annual cancer patient experience survey are out today. For those of us committed to improving patient access to clinical trials and other research, this year's report is particularly interesting. As far as I know, this is the first year that the survey asked patients whether taking part in research had been discussed … Continue reading Cancer patient experience survey results show variations in access to clinical trials and research
Clinical trials activity report for England highlights progress but much work still to be done
The National Institute for Health Research (NIHR) CRN CC has today published its clinical research activity report for the final quarter of 2011/12. Some of the data and a good summary of what they mean is also available on The Guardian website. Last year was the first that this sort of information was made widely available. So … Continue reading Clinical trials activity report for England highlights progress but much work still to be done
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.
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
The Academy reports on research regulation…and a reminder of the Guardian’s Q&A about public involvement
The Academy of Medical Sciences (AMS) today published its report of the meeting it held a few months ago, looking at progress with improving the regulatory of environment for medical research. I blogged about being a panellist at the meeting as you may recall. The report's conclusions are noteworthy for the second bullet point about public … Continue reading The Academy reports on research regulation…and a reminder of the Guardian’s Q&A about public involvement
simondenegri.com 