Who knows, patients and the public might one day get to walk on the red carpet ?
Author: simondenegri
Patient charter on genome sequencing is a call to arms to the NHS, charities and researchers
It is one of the boldest and most exciting initiatives in UK health research and care that I have witnessed. It's also happening at lightning speed. In the eighteen months since the Prime Minister announced the 100,000 Genomes Project to coincide with the NHS's 65th birthday in 2013, we have gone from almost a standing start … Continue reading Patient charter on genome sequencing is a call to arms to the NHS, charities and researchers
A&E to the rhythm of Casabianca: Our Bubb stood on the crowded ward
News reaches these parts that Stephen Bubb, CEO of the charity umbrella group ACEVO, has cut a deal with the Government to unleash hundreds of charity volunteers on the NHS to alleviate pressures on A&E. http://www.theguardian.com/society/2015/feb/05/charity-a-and-e-hospital-age-uk-red-cross-royal-voluntary-service-nhs-england-budget I genuinely do not know how I feel about this. Clearly, Sir Stephen and his colleagues are right to … Continue reading A&E to the rhythm of Casabianca: Our Bubb stood on the crowded ward
Medical research can not ignore the wishes of the dying forever
A study published in the Annals of Internal Medicine on Monday has been causing quite a stir in the United States this week. It has concluded that, despite national efforts there to improve end-of-life care: 'proxy reports of pain and other alarming symptoms in the last year of life increased from 1998 to 2010.' In other … Continue reading Medical research can not ignore the wishes of the dying forever
Nuffield report underlines importance of public participation if people are to trust how their medical records are used for research
The Nuffield Council on Bioethics have today published their report: 'The collection, linking and use of data in biomedical research and health care: ethical issues' following months of inquiry by an expert working group Chaired by Professor Martin Richards. Here's a copy of the actual report. There is much coverage in the media already including the … Continue reading Nuffield report underlines importance of public participation if people are to trust how their medical records are used for research
Churches’ late showing on ‘three-person baby’ issue is based on a wing and prayer not evidence
I hope those MPs who have yet to decide how to vote in tomorrow's parliamentary debate on the statutory instrument on mitochnodrial donation - 'three-person babies' - will take a few minutes to listen to Sharon Bernardi in this BBC News report from the weekend. Sharon has lost seven children to mitochonria disease and her appeal for this legislation … Continue reading Churches’ late showing on ‘three-person baby’ issue is based on a wing and prayer not evidence
An aside on the Royal Society’s life with Brian and Coxing science through the election
So the Royal Society has appointed Professor Brian Cox as its new Professor for Public Engagement in Science at the University of Manchester. The physicist who is becoming increasingly eponymous with science on TV in the same way that the broadcaster and naturalist, David Attenbrough, has with wildlife programmes, or Janett Street-Porter became associated with youth programming in the … Continue reading An aside on the Royal Society’s life with Brian and Coxing science through the election
INVOLVE launches new benefits advice service for public involvement in NIHR research @NIHRINVOLVE #ppibenefitsadvice
This is an important and timely intervention by INVOLVE to ensure people get the right advice and support about how payment of fees and expenses for their public involvement in NIHR might affect their receipt of state benefits. Please read the following for more information on how this service will operate. With thanks to our … Continue reading INVOLVE launches new benefits advice service for public involvement in NIHR research @NIHRINVOLVE #ppibenefitsadvice
A new deal for patients needing surgery: strategy launched #rcoaperiop
I am not a believer in the wholesale integration of health and social care in the organisational sense. In my view, the evidence for its potential benefits is less than compelling. Do we really need such a major structural change in health and social care given how bad our record is on achieving it well … Continue reading A new deal for patients needing surgery: strategy launched #rcoaperiop
Musings about badges and labels and that term ‘human guinea pig:’ what would your bumper sticker say as a patient in research?
How wonderful to see UK nurse Pauline Cafferkey discharged from hospital over the weekend having made a full recovery from Ebola. You may remember that, on New Year's Day as Pauline's condition worsened, the papers were full of the fact that she was to be treated with a new drug. I think the time-dishonoured phrase … Continue reading Musings about badges and labels and that term ‘human guinea pig:’ what would your bumper sticker say as a patient in research?
Comment: Science could learn from the Co-op about plugging into the public mood
The Co-op Bank has been through some tough times lately. But yesterday it felt as if it had returned to form. It announced the results of its latest ethics and values survey of its customers, staff and partners. The bank has had an ethical investment policy in place since 1992 and, since then, it has … Continue reading Comment: Science could learn from the Co-op about plugging into the public mood
Blog: Citizens in research: what’s your story going to be in 2015?
You'd think that Aintree Racecourse, home of the Grand National, would be the perfect venue at which to dwell on the barriers to how we involve the public in research. What with 'Bechers Brook' and 'The Chair,' fences over which horses and riders stumble and tumble every year. It would only be right to follow suit, would … Continue reading Blog: Citizens in research: what’s your story going to be in 2015?
Is it time to give patients the opportunity to self-refer themselves to take part in NHS research?
Harpal Kumar, the Chief Executive of Cancer Research UK, yesterday posted a blog about the new task force he is leading for NHS England on cancer diagnosis. The aim of the task force is to enable people to get an earlier and speedier diagnosis of their tumour in the future. But it will also be looking at treatment and … Continue reading Is it time to give patients the opportunity to self-refer themselves to take part in NHS research?
Medical research may appear a pantomime at times but all good pantos hold a lesson or two
First his head came into view, followed soon after by his tail..... On Boxing Day Cancer Research UK issued figures suggesting that almost 600,000 deaths from cancer between 2007 and 2011 could have been prevented by healthier lifestyles. Then, on New Year's Day, we were told that scientists at John Hopkins in University in the … Continue reading Medical research may appear a pantomime at times but all good pantos hold a lesson or two
In support of the Rome Declaration on responsible research and innovation
After yesterday's publication of the results of the Research Excellent Framework (#REF2014) comes the post-mortem, introspection and then inevitable debate about REF2020. We will have to wait a wee while before we learn more about the impact assessment aspect of #REF2014 and the overall story it tells us about how research in higher education instiutions … Continue reading In support of the Rome Declaration on responsible research and innovation
Comment: Don’t stand in the way of the Government’s new science strategy if you are a citizen
Because you might be hit by a £30M laser. Or a 'catapult' at double the price. But you certainly won't be bowled over by its commitment to public engagement. Yesterday the Government published its long-awaited Science and Innovation Strategy: http://www.bbc.co.uk/news/science-environment-30515346 The plan sets out a comprehensive programme of investment totalling £2.9 billion of yours and … Continue reading Comment: Don’t stand in the way of the Government’s new science strategy if you are a citizen
MRC publishes new communications and engagement strategy (plus new film!)
The Medical Research Council (MRC) has published a refreshed communications and engagement strategy. There is a section on public involvement on P12 of the document which is the fullest narrative I have seen of their corporate intentions around this aspect of working in partnership with the public. It is a good document and important to … Continue reading MRC publishes new communications and engagement strategy (plus new film!)
People and their medicines: from bench to inside pocket
Shall we start off with a sweeping generalisation? This is a blog after all. Over the years it has been my impression that researchers care quite a lot about what happens next with their scientific discovery, whether it be identifying a genetic mutation or running a clinical trial. The problem is, research funders don't. They … Continue reading People and their medicines: from bench to inside pocket
#INVOLVE2014 is the perfect place for you to start using social media in public involvement: top tips
Monday saw INVOLVE publish its long awaited guidelines on using social media as part of active public involvement in research. And excellent they are too since they were put together with your help. You can find the full document here: http://www.invo.org.uk/posttypepublication/guidance-on-the-use-of-social-media/ And nine examples of how social media has been used in public involvement here; … Continue reading #INVOLVE2014 is the perfect place for you to start using social media in public involvement: top tips
Breaking Boundaries review of public involvement in the NIHR – Update Ahead of #INVOLVE2014
So, as you can imagine, I am limbering up today and tomorrow in preparation for the INVOLVE Conference - 'Changing Landscapes' - which takes place in Birmingham later this week. That means sit-ups, press-ups, gargling water and mnemonics to remember the difference between participation, engagement and involvement and other useful stuff like that. It should be … Continue reading Breaking Boundaries review of public involvement in the NIHR – Update Ahead of #INVOLVE2014
simondenegri.com 