Today's rare foray onto the UK political scene by Tony Blair reminded me of a simpler time when politicians just used to repeat the same word three times for added emphasis. Or was it the daleks who used to do that? Funny how nightmares and the stuff of dreams can sometimes get confused in this way. Should either … Continue reading Blog: Consent, consent, consent…….new public dialogue report from @HRA_Latest
This is a really interesting study published in PLOS ONE today. Eessentially it's a survey of the attitudes of 2300 participants in TwinsUK (a national biobank) to giving their consent to medical research. The full paper can be found here. The results of the survey would seem to highlight what has been a growing theme in the … Continue reading Consent for medical research comes under scrutiny yet again: time for ethics committees to stop second-guessing the public?
Science historian and Guardian science blogger, Vanessa Heggie (@HPS_Vanessa) has written a fascinating piece about how AIDS activists among others changed the way we run clinical trials and persuaded researchers to adopt new methods. That's certainly the history lesson passed down to me as Chair of INVOLVE by previous members. They will tell you that, before we ever talked … Continue reading The Medical Research Council (MRC) is ‘a good egg’ and that’s the issue
We have had two pieces of good news about health research of patient benefit this week. First, the National Institute for Health and Care Excellence (NICE) issued new guidance saying that tamoxifen or raloxifene taken daily for five years can cut breast cancer risk by 40%. This means women at risk of developing breast cancer have … Continue reading Blog: We have the public to thank for this week’s well-informed decisions in health research
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
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?
The Cystic Fibrosis (CF) Trust launched its new five-year research strategy in London yesterday. I have to say I am highly impressed. In terms of content and dissemination they seem to have single-handedly shown the rest of the medical research charity sector how to embrace the future as a funder and a patient group. Why is it … Continue reading Now this is good, very good. The Cystic Fibrosis Trust has a transparent new research strategy
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
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
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 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…
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
I noticed this in Civil Society from a few hours ago. Cancer Research UK (CRUK) - the largest publicly funded medical research charity in the UK - is reported to be launching a new identity in September to coincide with the 10th anniversary of its establishment from the merger of Cancer Research Campaign and the … Continue reading Cancer Research UK to get a new look
In his Guardian blog yesterday, Dick Vinegar, asks a genuinely good question: 'Who is fighting the patient's corner?' He writes about his recent attendance at a Westminster Health Forum conference about Healthwatch, and voices concern that all we are doing is creating just another bureaucracy in the name of patients. A thick, muddy, layer of … Continue reading Is it an industry or a movement we are creating?
It has come to this. The world's top tennis players rush their shots to beat an 11pm curfew. Bruce and Sir Paul are turned-off mid-performance. And they don't use real javelins in schools. Looking across the the athletics field at my sons' school sports day, I spied a clutch of children competing in the javelin. Except this … Continue reading There is no point to the javelin
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
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
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
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
Divvying up the costs of conducting research in the NHS funded by medical research charities is an intricate business. Who pays for that research nurse, their time in administering the extra treatment required in a clinical trial, the procedures and equipment needed as part of its conduct, the oversight and governance needed to ensure that things are done … Continue reading DH and charities reach acoRD over medical research costs