Be careful. There's a lot of it about. You might want to avoid crowds. Spend a few days in bed. In the olden days, if you talked about public involvement, researchers and clinicians would look at you as if you had caught a disease? Some with pity in their eyes - 'you poor misguided soul.' … Continue reading Is public involvement in health research a disease or a way of life?
Author: simondenegri
A new paper on ‘involving people with intellectual disabilities’ in the STOP #diabetes study holds lessons for us all
One of the things I feel incredibly fortunate about in doing my role is that people send me all sorts of interesting papers, articles, videos and other stuff. I do get round to looking at them all, although it can take me a bit of time. More often than not something will bubble to the surface … Continue reading A new paper on ‘involving people with intellectual disabilities’ in the STOP #diabetes study holds lessons for us all
Wonderful new book for children with relatives in intensive care @ICUsteps Please RT.
I know from personal experience that visiting a relative in an Intensive Care Unit (ICU) can be harrowing. For children and young adults it must be particularly bewildering and frightening. But I am pleased to say that help is at hand. ICUsteps is great charity run by ex-patients, relatives and health professionals to support people … Continue reading Wonderful new book for children with relatives in intensive care @ICUsteps Please RT.
An Open Letter to Mark Zuckerberg and Priscilla Chan about medical research @GenrYPAGs @facebook
Dear Mark and Priscilla, I am so pleased you want to support global efforts to eradicate disease. The $3 billion funding over the next decade that you announced yesterday will make a huge difference. I sincerely hope that, in pursuing your bold ambitions, you will look to use Facebook's energy and expertise to help us … Continue reading An Open Letter to Mark Zuckerberg and Priscilla Chan about medical research @GenrYPAGs @facebook
We are in danger of enslaving patients to the system.
What is happening to us? Really, what is happening to us? Last week I chaired a meeting like any other in an institution like many others. The heads of patient experience/engagement/involvement (take your pick and delete as necessary) at a number of health organisations were there to talk about their approach to the aforementioned. All … Continue reading We are in danger of enslaving patients to the system.
It’s time to talk about ‘cutting edge’ public involvement and engagement in the same breath as world-class health research #NHSResearch
Yesterday the National Institute for Health Research (NIHR) announced more than £800 million funding for 20 Biomedical Research Centres. These will conduct 'cutting edge research' - everything from cancer and dementia to the rarest of diseases. It is brilliant news for patients and the future health of the nation. Each of the applications from the … Continue reading It’s time to talk about ‘cutting edge’ public involvement and engagement in the same breath as world-class health research #NHSResearch
‘Ed Talk: Patients as Co-authors of Care #PPFEd16 @RCPEdin
Here's the text of my lecture today at the Royal College of Physicians of Edinburgh Past, Present and Future of Medicine Conference. Great to share the stage with writer and broadcaster Sally Magnusson. Please check out her charity 'Playlist for Life.' Plus her book - 'Where Memories Go: Why Dementia Changes Everything' which I have … Continue reading ‘Ed Talk: Patients as Co-authors of Care #PPFEd16 @RCPEdin
While scientists argue it out on ‘statins island’ what are the public meant to do? #statins
Battling scientists, warring doctors, sparring academic journals - what are we to make of the statins debate? It is on days like this, in an age when every aspect of public life is under ever intense scrutiny, that science can appear as if it exists on an island all its own. Whatever The Lancet's intentions behind its … Continue reading While scientists argue it out on ‘statins island’ what are the public meant to do? #statins
Patients and the public are vital to science’s role in a post #Brexit Britain. A response to Pfizer’s MD, Erik Nordkamp
I do try to live up to my Tunbridge Wells postcode by firing off regular 'disgusted' letters to the press and, in particular, The Daily Telegraph (DT). On Monday Erik Nordkamp, Pfizer's Managing Director, wrote this article about the importance of the life sciences industry to a post-Brexit economic strategy. So I sent this to … Continue reading Patients and the public are vital to science’s role in a post #Brexit Britain. A response to Pfizer’s MD, Erik Nordkamp
A lab-based environment should be no barrier to public involvement in research #userinvolvment
I am often asked whether it is difficult - if not impossible - to involve the public in laboratory based research where researchers have limited or no direct contact with patients and the public. My answer is that it might be difficult but it can be done. And the benefits can be significant. The real challenges … Continue reading A lab-based environment should be no barrier to public involvement in research #userinvolvment
Blog: Being a Chair and why patients are just as good at it #researchgovernance
A head-hunter has written to me this morning - as they have to many others no doubt - asking whether I know of any good 'research' candidates to Chair a panel looking at research into patient and family experience. My first thought? To ask why the client thinks it's vital for someone with research experience … Continue reading Blog: Being a Chair and why patients are just as good at it #researchgovernance
Blog: Fascinating insight into differences across the UK in use of internet to find health info via @Ofcom
Ofcom - the UK's communications regulator - this week published its annual Communications Market Report for 2016. As ever, it's an absorbing insight into how the British are using their smartphones and the internet. This year we learnt that we are better connected than ever before but that many of us are feeling the need for … Continue reading Blog: Fascinating insight into differences across the UK in use of internet to find health info via @Ofcom
Cancer report highlights need for more research into quality of life issues @macmillancancer
We can all be heartened by the picture portrayed in Macmillan Cancer's 'Cancer: Then and Now' report published yesterday. The report is a fascinating look at how the life chances of people with cancer have changed over the last 25 years. People on average are now twice as likely to survive at least 10 years after being diagnosed … Continue reading Cancer report highlights need for more research into quality of life issues @macmillancancer
Brexit and UK science: a cartoon
I wouldn't pretend to be a cartoonist (as if I need to say that!). But in a week when there has been much talk about the impact of Brexit on UK science, this cartoon sprung to mind. Composed on my early morning walk with the dog. Keep the faith.
Young award winners and public involvement film showing announced @OfficialNIHR #Peoplearemessy
You may recall me reviewing 'People are messy,' the play about public involvement in health research that has been developed by Theatre of Debate with the support of the Oxford Biomedical Research Centre (BRC). I gave it five stars. As the play has been touring schools, young people have been invited to enter a competition … Continue reading Young award winners and public involvement film showing announced @OfficialNIHR #Peoplearemessy
Blog: Life in public involvement in research after Brexit.
A week before the Brexit referendum I had coffee with a friend and colleague. As we debated what the likely result might be, they jokingly remarked: 'Simon, I'm not sure I like this public involvement business any more.' How we laughed. We often talk about public involvement as 'democratising' a process; a condiment to be … Continue reading Blog: Life in public involvement in research after Brexit.
Blog news: Life sciences giants join forces to promote young people’s involvement in health research
Some of the leading life sciences organisations in the UK have joined forces to issue a 'statement of aspiration' about the involvement of young people in research saying: 'Collaboration between young people and commercial researchers should become an established and normal way of working. Learning from this collaboration should be actively translated wherever possible to … Continue reading Blog news: Life sciences giants join forces to promote young people’s involvement in health research
The NHS is becoming like the Trevi Fountain…#sixprinciples
I am sure many of you will have heard the legend about the Trevi Fountain in Rome which inspired the 1954 film 'Three Coins in the Trevi Fountain' and title song. It says you must throw three coins into the fountain: the first guarantees your return to Rome, the second leads to a new romance, … Continue reading The NHS is becoming like the Trevi Fountain…#sixprinciples
EU issues draft guidelines on providing clinical trial results so you and I can understand them #clinicaltrials
You probably don't need to hear another thing about the EU, do you? (By the way what a terrible EU referendum campaign it is - have you ever heard such hyperb******s from our politicians?) But this really is a good thing. Following the passage of the new EU Clinical Trials Regulation, the European Commission has started … Continue reading EU issues draft guidelines on providing clinical trial results so you and I can understand them #clinicaltrials
Today’s public involvement in health research t-shirt
I didn't know this but, apparently, the word 't-shirt' does not just refer to the summer garment. It can also be used to describe a very brief 'blog posting.' There, I bet you feel better for knowing that? Anyway, here's my washed, cleaned and ironed t-shirt for today. Later this afternoon I am speaking to … Continue reading Today’s public involvement in health research t-shirt
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