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... Continue Reading →

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... Continue Reading →

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... Continue Reading →

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 →

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... Continue Reading →

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... Continue Reading →

There is no point to the javelin

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 →

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 →

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... Continue Reading →

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