There was an online discussion hosted by The Guardian this morning about commercially sponsored clinical trials in the NHS. You can get the jist here.
Author: simondenegri
A few bytes and bobs of news about medical records, open data etc – the Danish are not just good at making drama
Data and its use for society's benefit is one of the areas where we are now seeing rapid developments in both practice and policy. And not just in terms of health care or medical research. I thought I'd link-up a few of the announcements and news items that have happened just this past week to give people … Continue reading A few bytes and bobs of news about medical records, open data etc – the Danish are not just good at making drama
The dementia challenge: space race, special relationship or perhaps simple common endeavour?
This early part of the week has found me much on the move with rarely a still moment. But now, at last, I find myself in my room at a business school where I am due to give a talk to NIHR colleagues tomorrow morning. My nomadic lifestyle has meant that I have only grabbed … Continue reading The dementia challenge: space race, special relationship or perhaps simple common endeavour?
Patient involvement in the Health and Social Care Act: National Voices Briefing
National Voices have published an excellent briefing on what the Health and Social Care Act (which received Royal Assent today) means for public involvement in care.' And how we need to actively follow-up with the new NHS structures and bodies established by the legislation to ensure they keep to the letter of the law. Read … Continue reading Patient involvement in the Health and Social Care Act: National Voices Briefing
From crisis to challenge: PM to spell out new dementia plan including research boost
This morning's news bulletins are full of stories trailing the Prime Minister's speech in London later today, when he is expected to launch a national challenge on dementia - from accelerating research funding and setting up a new academic science centre, to establishing a national screening programme and encouraging people to donate their brains to research. … Continue reading From crisis to challenge: PM to spell out new dementia plan including research boost
Canada charts a path out of its clinical research ‘death valleys’ (their words not mine!)
As you know, I do like to wander abroad from time to time, even if it is only on the internet... I thought this piece in PharmaTimes about the pump-priming of clinical research in Canada by the Canadian Institutes for Health Research (CIHR)/pharma companies might be of general interest to people. The aim is to see their way … Continue reading Canada charts a path out of its clinical research ‘death valleys’ (their words not mine!)
Two articles worthy of a repeat airing….on ‘The Rise of the Patient Leader’ and the need for a ‘Patient Experience Framework.’
This article (entitled 'The Rise of the Patient Leader') written by David Gilbert at InHealth Associates appeared in HSJ earlier this year. I didn't send round a link at the time because of HSJ's paywall. But now you can find it on InHealth Associates' website free of charge...which seems a very good excuse to send it round and … Continue reading Two articles worthy of a repeat airing….on ‘The Rise of the Patient Leader’ and the need for a ‘Patient Experience Framework.’
EUPATI if you want too….
Thought people might be interested to know that the European Patients' Academy on Therapeutic Innovation (otherwise known as EUPATI) is holding its launch meeting on 27th March 2012 in Copenhagen. Details and programme here. I wrote about the EUPATI initiative on my blog in February if you want to find out more. Also, it would … Continue reading EUPATI if you want too….
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?
Rare Disease UK Consultation Days on Govt’s Rare Diseases Strategy
Just had an email from Rare Disease UK (RDUK) saying they are setting-up four consultation days for patient groups to discuss the rare diseases consultation paper put out by the four health departments across the UK a few weeks ago. Here are the dates: Wales - Cardiff – 1st May – location TBC /England - … Continue reading Rare Disease UK Consultation Days on Govt’s Rare Diseases Strategy
The post-conference society beckons….
We are inextricably bound to meetings and conferences as the way to do things aren't we? How dull, how sad. To which point I was entertained by this fab idea for an 'unconference' being run by the Committe for the Public Understanding of Science (COPUS) in the States. The prospect of potential meeting anarchy brings … Continue reading The post-conference society beckons….
Cable and Willetts take public dialogue on science out of cold storage
It was only this time last week that, as I mulled over ideas for this blog, I considered a post listing some interesting 'facts' about public engagement including the number of days since the Department for Business Innovation and Skills (BIS) had said anything about future policy initiatives in the area of science and society. I should not … Continue reading Cable and Willetts take public dialogue on science out of cold storage
New paper identifies key policy questions for democrats and scientists
A unique and fascinating paper published in PLoS ONE which sets out key questions in the relationship between science and policy as suggested by 200+ individuals who took part in an exercise organised by the emergent Centre for Science and Policy based in Cambridge.. The Centre is certainly one to watch for the future. I … Continue reading New paper identifies key policy questions for democrats and scientists
Care Homes Research: New toolkit produced to ENRICH lives
Given the concerns over the quality of care home provision in the UK, it is essential that we invest in research that will improve care-giving in these settings for the future. The Dementia and Neurodegenerative Diseases Research Network (DeNDRoN) have just launched a new toolkit (website) entitled 'Enabling Research in Care Homes (ENRICH)' to help promote and … Continue reading Care Homes Research: New toolkit produced to ENRICH lives
It’s all in a name: a Citizens Innovation Fund
With the budget not too far away, it is that time of year when organisations up and down the country are putting last-minute submissions into HM Treasury. Give more money into this, lower tax here, or there, they say. Very few, if any, will call for this or that to be cut. And while some … Continue reading It’s all in a name: a Citizens Innovation Fund
It’s a rare day when nothing happens….
Without wishing to open that old hornet's nest about the value of Awareness Days/Weeks/Years [delete as necessary], it does seem as though February and March are the busiest months for such events doesn't it? Tweets announcing the latest and the greatest pop up on my phone like the offspring of rampant sheep, such are their regularity. Are there … Continue reading It’s a rare day when nothing happens….
Health Research Authority (HRA) stocks rise in first public flotation
The word on the street is that yesterday's Health Research Authority (HRA) public and patient involvement workshop - it's first public flotation if I can put it like that - was very successful indeed. That has to be good news. I think we should be encouraged that the team at HRA has barely got its feet under … Continue reading Health Research Authority (HRA) stocks rise in first public flotation
Science interviews: Tooke goes collaborative, and Glover is not overcome by emotion
I thought the following interviews might be of general interest. Both are with recently appointed science leaders. Both, among other things, major on the need for greater collaboration in research. Times Higher Educational Supplement (THES) interviews the new President of the Academy of Medical Sciences, Sir John Tooke. Sir John chaired the discussion panel I was … Continue reading Science interviews: Tooke goes collaborative, and Glover is not overcome by emotion
N=1: Defining medicines development and use from a patient perspective
I am not sure what made me think about and look for this report: 'N=1: Why people matter in medicines.' Perhaps it was all the talk last week about the Department of Health's 11th report to parliament on the Pharmaceutical Price Regulation Scheme (PPRS) - in essence the way in which drug prices are set … Continue reading N=1: Defining medicines development and use from a patient perspective
Friday drivetime blog: regional accents in public and patient involvement
It is still very early days in my new role as the NIHR Director of Public Participation and Engagement but I have already received a number of invitations to visit and see some of the great initiatives happening up and down the country. Keep them coming. It is my intent to get 'out there' as … Continue reading Friday drivetime blog: regional accents in public and patient involvement
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