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
medical research
Who’s up and who’s down in health and research this week?
1. 'The dog ate my whole doctor's surgery.' Yep, it's those dastardly GPs again. Ever since the weekend news that many cancers are first diagnosed in A&E we've seen the excuses just roll off their collective tongues. So much so you'd think they'd said them before. We're underfunded, underpaid. stunned by so much change, and … Continue reading Who’s up and who’s down in health and research this week?
A nod to Nelson Mandela on the eve of the G8 Dementia Summit (agenda published)
It is no surprise that, in death as in life, Nelson Mandela has caused us to gaze upon humanity with warmth and optimism. I am sure I am not alone in having taken a great deal of pleasure from reading the celebrations of his life and reflecting on how different tomorrow would look were it not … Continue reading A nod to Nelson Mandela on the eve of the G8 Dementia Summit (agenda published)
Comment: Is the G8 Dementia Summit about scaling new heights or making base camp?
This time next week they will be laying the tables and giving the carpet at Lancaster House in London one last hoover. All in preparation for the G8 Dementia Summit on 10/11th December 2013. I expect the current stream of articles and stories about dementia will become a veritable flood ahead of the big day. … Continue reading Comment: Is the G8 Dementia Summit about scaling new heights or making base camp?
Drug safety regulation need not be a jagged edge on which patients catch themselves
Off to Liverpool today. I am chairing a session at the Pancreas Society's first ever PPI forum. This is the opener to their annual scientific meeting which takes place the rest of the week. Last Friday was another first. I spoke to, and took part in, the inaugural meeting of the MHRA's ( Medicines and … Continue reading Drug safety regulation need not be a jagged edge on which patients catch themselves
Jan 2014 Lancet and DH symposium: ‘increasing value, reducing waste’ in research
Lancet Symposium on research: ‘increasing value, reducing waste’ This has to be one of the most important issues for the public and health research. The debate on 'increasing value, reducing waste,' was kicked-off if not brought into sharp relief by a 2009 paper by Chalmers and Glasziou published in the Lancet which estimated that 85% … Continue reading Jan 2014 Lancet and DH symposium: ‘increasing value, reducing waste’ in research
Health and social media: ‘APPY’ days are here again….
PatientView has followed up last year's excellent debut directory of health apps across the EU with a new website. myhealthapps.net aims to provide the same information as the directory but in a smart online version: http://myhealthapps.net/search/results/health-research/name/z-a/all/all I have done a little bit of road-testing (on my mobile phone no less) and it's pretty impressive what … Continue reading Health and social media: ‘APPY’ days are here again….
Swipe here to donate…Tissue donation for research: what’s your view? Blog and survey.
The aforementioned survey is after the blog post if you can't stand the thought of reading this intro..... I somehow think that 'data' will be a significant feature of my life over the next few weeks. Next week I am a panellist at the NIHR/ABPI conference '360 of Health Data: Harnessing Big Data for Better … Continue reading Swipe here to donate…Tissue donation for research: what’s your view? Blog and survey.
NIHR gives ‘chapter one and verse’ on patients and the public in research: 2012/13 annual report published
Forgive me. For once, I write with a semi-official hat on. But this afternoon feels like a bit of a milestone moment in lifting public involvement in research ever higher on people's agendas. If you have heard me speak in public then you will know I start by saying how proud I am that the … Continue reading NIHR gives ‘chapter one and verse’ on patients and the public in research: 2012/13 annual report published
Avoiding Laurel and Hardy when it comes to science can be difficult for the public
An early start today finds me waiting for a flight to Belfast where I am speaking at the 9th Scientific Conference of the Northern Ireland Chest Heart and Stroke (NICHS) charity. Just time enough to pen a quick blog then. Lucky me. Poor you. Last night I was looking at my papers for a meeting … Continue reading Avoiding Laurel and Hardy when it comes to science can be difficult for the public
CMO as good as her word on young people’s involvement in research
The Chief Medical Officer, Professor Dame Sally Davies, published her annual report today. Actually, it's two reports. The first is the usual state of the nation summary of the population's coughs and splutters. The second, uniquely this year, looks in depth at the worrying lack of attention we have paid to young people's health. It's … Continue reading CMO as good as her word on young people’s involvement in research
The ragged trousered patient?
'Why does it have to be so complicated? It is so frustrating. I just wanted to do something useful,' My Canadian friend's irritation with the increasingly impenetrable language that we are creating around 'public involvement' was palpable. It was not the first plea for common sense to prevail I heard last week. It will certainly … Continue reading The ragged trousered patient?
Is Healthwatch England, Barking up the wrong tree?
Call me simple-minded but it never bodes well for an organisation in my view, if WORD persists in underlining your name in red. I should know. Nor does it bode well if your strategy doesn't fit on one side of A4. If people can't print it out they won't read it. In my opinion. But … Continue reading Is Healthwatch England, Barking up the wrong tree?
Health Research Authority makes its pitch to patients and the public
Now, how does the famous saying go? Some are born regulators, some become regulators, and some have regulation thrust upon them. Yesterday our medical research regulator - the Health Research Authority (HRA) - set out its strategy for public involvement: http://www.hra.nhs.uk/patients-and-the-public-2/how-the-hra-works-with-patients-and-the-public/our-strategy-for-public-involvement/ Regulators are the modern tool by which Governments operationalise law. Years ago it used … Continue reading Health Research Authority makes its pitch to patients and the public
Time to get personal over The Sun’s repeat offending on mental health
Sometimes in life you look back and wish you had stuck to your guns and withstood the utter humiliation you felt at the time. I had one of those moments last night when reading The Sun's despicable and misleading headline about mental health. It reminded me of an encounter I had ten years ago almost to the day. This was … Continue reading Time to get personal over The Sun’s repeat offending on mental health
Parkinson’s UK asks those affected by the disease to identify the top 10 unanswered research questions
Parkinson's UK is an excellent organisation. It is arguably an exemplar for other charities looking to involve patients and the public in medical research. This week, together with the indefatigable James Lind Alliance, it set about the task of asking people affected by Parkinson's - those with the disease, carers, family members, health and social care professionals etc., - … Continue reading Parkinson’s UK asks those affected by the disease to identify the top 10 unanswered research questions
The truth, the whole truth and nothing but….pharma
Here is a gripping report from this week's 'Adweek' (based in New York) about the new marketing strategies being used by pharmaceutical companies. Don't be put off by the reference to 'Obamacare.' The story is equally applicable to the United Kingdom. For it is essentially a tale about how disease is being re-packaged. Patient data is the new … Continue reading The truth, the whole truth and nothing but….pharma
We are in danger of running public involvement in health on Ryanair principles
Patient and public advocates in health and social care would make bloody good pilots. Year after year we ask them to help successfully land projects and initiatives in 'fuel critical' situations. They are having to carry more, and further. But for how much longer before someone has to declare a real fuel emergency? And a … Continue reading We are in danger of running public involvement in health on Ryanair principles
CLAHRCs could be the superheroes in quality improvement for patients in the UK
Yesterday my day began in Clerkenwell meeting with the new charity, MQ Transforming Mental Health (www.joinMQ.org). It is exciting to feel that we might at last be on the verge of seeing a strong charity profile in mental health research in the UK. But more baffling than ever why our existing mental health charities - … Continue reading CLAHRCs could be the superheroes in quality improvement for patients in the UK
NIHR and ABPI conference in November on ‘big data’
Click here for details of a National Institute for Health Research (NIHR) and Association of British Pharmaceuticals Industry (ABPI) joint conference on harnessing big data for health gains. Takes place in London on 21st November. The more it is used the more I dislike the term 'big data.' I mean, how to alienate your public in … Continue reading NIHR and ABPI conference in November on ‘big data’
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