I am indebted to a good friend and colleague of mine who, some time ago, sent me this BBC News story from last year. It reports on the rising concerns among Himalayan Sherpas about the lack of regard being shown towards their needs and the environment as scientists tromp all over the local geography. To the … Continue reading Comment: The Sherpa’s story and its relevance to public involvement in health research
NIHR
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
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
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
Round round get around I get around – Caldicott2, patient data, dementia portal and more!
So sang The Beach Boys who were on Radio 2's 'In Concert' this week. Not that I'm a great fan but it seemed apposite given my week. This has involved visits to TrialReach, Oxford (well, virtually!) to discuss plans for public involvement in the Biomedical Research Centre there, my good colleagues at BioMedCentral and, tomorrow, … Continue reading Round round get around I get around – Caldicott2, patient data, dementia portal and more!
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
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
New paediatric research facility opens at Alder Hey
A new paediatric clinical research facility has opened today at Alder Hey Hospital in Liverpool. Funding has come from the university, an Alder Hey appeal, and the National Institute for Health Research (NIHR). A very important development for children and their parents and the region's growing profile as a hub of nationwide efforts to improve child health. Click … Continue reading New paediatric research facility opens at Alder Hey
Have charities really put the brakes on public involvement in research?
I was pulled-over by the police on the M25 on Sunday night. Unbeknown to me, my car brake lights had failed so that they were permanently on. Quite apart from blinding any traffic on my tail, an unwitting driver could easily have mis-read my intentions with who knows what consequences. Thankfully that didn't happen. And by … Continue reading Have charities really put the brakes on public involvement in research?
Pro-research NHS Trusts talk in-depth about their challenges and opportunities
After my little rant yesterday about health research culture and public involvement, it seems only appropriate to share with you the following in the interests of journalistic balance. The latest NIHR Clinical Research Network (CRN) newsletter, aptly called 'News from the Network,' is a special edition featuring in-depth features on the NHS Trusts who were … Continue reading Pro-research NHS Trusts talk in-depth about their challenges and opportunities
The duty falls on all of us to issue that wake-up call to the NHS about its research mission
Last week, medical research charities among others hailed a series of Government amendments made to the Health and Social Care Bill. These place 'a strong duty across the Secretary of State, the NHS Commissioning Board and Clinical Commissioning Groups to promote research and the use of research evidence.' The amendments are in response to persistent lobbying; their … Continue reading The duty falls on all of us to issue that wake-up call to the NHS about its research mission
Social care research opportunities
We don't talk nearly enough about social care research. I sometimes wonder whether we have 'over-medicalised' the health research agenda at times, so that all we shout about are new medicines and treatments - me included. It is a trend that seems counter to the needs of our society and also the changes in the … Continue reading Social care research opportunities
Research is for life: making research part and parcel of the patient journey
I was very privileged to be asked to give the Furlong Christmas Lecture a few weeks ago. I hope this doesn't seem egotistical but here's the text of that lecture amended with useful links etc - it touches on and rehearses themes that will be familiar to those of you who have visited the blog … Continue reading Research is for life: making research part and parcel of the patient journey
Small research charity demonstrates power of asking questions
Today, we travel to the Lake District.... The British Tinnitus Association (BTA) is a small medical research charity which I had intermittent contact with while Chief Executive at the Association of Medical Research Charities (AMRC). It has a proud history of supporting research. Not unusually for charities of its size and type, while it represents … Continue reading Small research charity demonstrates power of asking questions
How’s your NHS Trust doing in the research league tables? Is Leeds the Man City of NHS Research? Does Bridgewater deserve the hairdrier treatment?
So NIHR CRN CC/The Guardian have today published a league table of how each NHS Trust is performing in research as defined by the number of research studies and the number of patients taking part. I believe this is the first time such a table has been compiled and a thoroughly good thing it is … Continue reading How’s your NHS Trust doing in the research league tables? Is Leeds the Man City of NHS Research? Does Bridgewater deserve the hairdrier treatment?
In defence of the clinical trial patient: a health research ombudsman?
Over a half a million members of the British public took part in clinical trials through the NIHR Clinical Trials Research Networks in 2010, a 24% increase on the year before. Those are the Government's figures, not mine. Last week's 'life sciences' announcement included a range of measures to increase patient recruitment to trials. These include … Continue reading In defence of the clinical trial patient: a health research ombudsman?
Dear David Cameron, being a ‘research patient’ is one thing, it’s being a ‘research citizen’ that interests us more
Wall-to-wall coverage of the Prime Minister's speech yesterday about life sciences and putting the NHS at the heart of innovation. All a bit frustrating therefore, that the full transcript of his speech is not yet available on the No 10 website as far as I can seen. The BBC has by far the best overview … Continue reading Dear David Cameron, being a ‘research patient’ is one thing, it’s being a ‘research citizen’ that interests us more
Patients, ethics committees and clinical research – NRES/INVOLVE report highlights ‘public’ challenge for new health research regulator (HRA)
Sometimes you are just defeated by the brilliance of others. So, if you are looking for a wonderful summary of what the autumn statement means for health research, then I can highly recommend Becky's Policy Pages. Clearly, the opening up of health data is the single most important strategic announcement in today's statement - much … Continue reading Patients, ethics committees and clinical research – NRES/INVOLVE report highlights ‘public’ challenge for new health research regulator (HRA)
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