Consent for medical research comes under scrutiny yet again: time for ethics committees to stop second-guessing the public?

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… Read More Consent for medical research comes under scrutiny yet again: time for ethics committees to stop second-guessing the public?

The Medical Research Council (MRC) is ‘a good egg’ and that’s the issue

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… Read More The Medical Research Council (MRC) is ‘a good egg’ and that’s the issue

Blog: We have the public to thank for this week’s well-informed decisions in health research

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… Read More Blog: We have the public to thank for this week’s well-informed decisions in health 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… Read More It’s NIHR Friday – Public involvement: did the research network move for you?

Now this is good, very good. The Cystic Fibrosis Trust has a transparent new research strategy

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… Read More Now this is good, very good. The Cystic Fibrosis Trust has a transparent new research strategy

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… Read More Political spotlight on Health Research Authority (HRA) intensifies

Comment: The Sherpa’s story and its relevance to public involvement in health research

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… Read More Comment: The Sherpa’s story and its relevance to public involvement in health research

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:… Read More Royal College looks to boost child health research with children’s charter

Is it an industry or a movement we are creating?

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… Read More Is it an industry or a movement we are creating?

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… Read More The NHS Commissioning Board Draft Mandate and patients in health research

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.… Read More New science networks herald more fertile ground for health innovation

DH and charities reach acoRD over medical research costs

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… Read More DH and charities reach acoRD over medical research costs