Should it be an oath? A raising of the INVOLVE flag outside labs and hospitals each morning? A hymn perhaps? Or something to be carried on your person like an equity card? Should there be a test? With questions such as how much public money is spent on health research each year? Or a vetting … Continue reading Blog: A citizenship test for UK health research? #patientleaders
Author: simondenegri
Academic Health Science Networks (AHSN) map and tender details for new AHSCs
I noticed a colleague had posted these on the Academic Health Sciences Network (AHSN) Linkedin group discussion site (you will have to sign in/register). So thought it would be good to share them with a wider public audience. Particularly as I would have thought an announcement following the tender process is due shortly. An overall map of … Continue reading Academic Health Science Networks (AHSN) map and tender details for new AHSCs
Science must ‘get real’ not build high-altars in this spending review
Science funding is on the verge of getting a right good hammering in the US. From afar it looks like the policy equivalent of the storms and twisters that each year cut a swathe along tornado alley running through the Mid-West. If you were watching on weather radar, this frightening picture would look like a … Continue reading Science must ‘get real’ not build high-altars in this spending review
Blog: Alzheimer’s should be more than a footnote in Mrs Thatcher’s story #Thatcher
Alzheimer's disease is getting a reputation for its merciless pursuit of the political elite of the 70s and 80s. Think Harold Wilson, Ronald Reagan and now Mrs Thatcher. One hopes that some good may come of it; a doubling of the efforts to find a cure would be a most suitable legacy. Of their passing from this … Continue reading Blog: Alzheimer’s should be more than a footnote in Mrs Thatcher’s story #Thatcher
Music Exposure Study: Please take this quick test + help us learn how music affects l/term hearing
Not often that I do this but this important 'Music Exposure Study' study is looking for thousands of volunteers and I thought I would help....Please take part and also retweet. You may have seen this hearing impairment study announced earlier last year. Researcher, Rob Mackinnon, based at the NIHR Nottingham Hearing Biomedical Research Unit is … Continue reading Music Exposure Study: Please take this quick test + help us learn how music affects l/term hearing
It’s NIHR Friday inc. new publications, a competition and NIHR CCF makes the Grade with patients
Yes, it truly does seem as though Friday should be dubbed 'NIHR Friday' given the propensity for my erstwhile colleagues to push info out on the aforementioned day. The clutch of interesting announcements this week include: Publication of the NIHR Annual Report for 2011-2012. You know, I'm sorry if this offends some people but I'm … Continue reading It’s NIHR Friday inc. new publications, a competition and NIHR CCF makes the Grade with patients
Our NHS: If there is a patient on board could they please make themselves known to the cabin crew
The NHS would appear to be suffering an in-flight emergency. It is locked on auto-pilot. The cabin crew are unsure what to do. A few are close to panic. The nature of the problem is unclear. The causes indeterminate. No one was trained for this. Cabin crew announcements become more insistent and louder by the … Continue reading Our NHS: If there is a patient on board could they please make themselves known to the cabin crew
Survey: Have your say in the #red4research debate: vote now!
So, earlier this week, I wrote a very brief blog about a visit to Nottingham where I met some of the staff from the Medicines for Children Research Network (MCRN) in the East. They have recently adopted a new ‘red for research’ uniform that all staff have to wear in clinical settings. You can read … Continue reading Survey: Have your say in the #red4research debate: vote now!
Turning ‘red for research:’ staff show their true colours
This deserves a wider audience. During my visit to Nottingham yesterday I met some of the staff from the Medicines for Children Research Network (MCRN) in the East. They have recently adopted a new 'red for research' uniform that all staff have to wear in clinical areas. You can read more about it in their … Continue reading Turning ‘red for research:’ staff show their true colours
A poem about research to mark World Poetry Day
Spoke at the Trent Clinical Local Research Network (CLRN) 'life sciences' conference this morning. What a nice bunch of people. It being World Poetry Day I read out the following poem about being a patient in research: If we work together We can do it better This thing called research. This endeavour. So here I … Continue reading A poem about research to mark World Poetry Day
New stuff!..Dementia ‘infokit’, ‘Building Research Partnerships,’ CLAHRC Q&As, AHSNs and ABPI
Top initiatives today..... Care to learn to care better. The NIHR Dementia & Neurodegenerative Diseases Research Network (DeNDRoN) today launched their new 'Patients in Research' infokit. It's an excellent free resource showcasing work from across health and social care, stories, ideas, tips and tools. This great piece of kit is all part of a larger effort … Continue reading New stuff!..Dementia ‘infokit’, ‘Building Research Partnerships,’ CLAHRC Q&As, AHSNs and ABPI
Political spotlight on Health Research Authority (HRA) intensifies
I am sure the new Health Research Authority (HRA) can take care of itself. But the expectations being heaped on it by others show no signs of abating. I wouldn't be surprised if tomorrow someone calls on it to cure cancer. If it had been created by a Blair Government it would surely have been … Continue reading Political spotlight on Health Research Authority (HRA) intensifies
A budget for citizens in health research; join an Innovation Gym today and the RI is saved
It's the Budget tomorrow. You young'uns never had it so good being able to get all the stuff on-line when the Chancellor of the Exchequer sits down following his Commons statement. As a researcher for a political lobbying firm twenty years ago I used to have to queue at the Treasury for what they called … Continue reading A budget for citizens in health research; join an Innovation Gym today and the RI is saved
New websites launched for people looking to join a clinical trial; but will patients want a ‘coming together’ at some point?
This week, patients got a couple more options for finding out about clinical trials they can take part in. Patientslikeme (which was launched in the United States a few years ago) has unveiled its new new clinical trials site which you can find here. Patientslikeme is capturing a lot of attention here in the UK … Continue reading New websites launched for people looking to join a clinical trial; but will patients want a ‘coming together’ at some point?
INVOLVE steps forward to change behaviours on plain English summaries of health research
I make no apology for being a little bit obsessed by plain English summaries of research this week. Events have conspired to make it this way. So, what did NIHR do when faced late last year with rising concern among academics, researchers, patients and the public about the poor quality of lay summaries? It commissioned … Continue reading INVOLVE steps forward to change behaviours on plain English summaries of health research
The lay summary is dead, long live the lay summary (#A2UComp)
'They can't write for toffee.' 'They' being scientists of course. But like most generalisations, this statement is utter tosh. You only had to be at the 'Access to Understanding' awards (#A2UComp) at the British Library on Monday night to realise that. The lay summaries that I and my fellow judges had been asked to review … Continue reading The lay summary is dead, long live the lay summary (#A2UComp)
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 Comment: The Sherpa’s story and its relevance to public involvement in health research
The seven mistakes that organisations make on public involvement
I could easily have chosen more than seven. But I was thinking along the lines of the 'seven wonders.' Please do free to comment with an eight, ninth etc... Anyway, here are what I think are the seven most common mistakes organisations make on public involvement. 1. 'A lack of heart and soul:' Not embracing … Continue reading The seven mistakes that organisations make on public involvement
How a Dame and the Great British Public might bring an end to the patient data pantomime…
The Health Service Journal (HSJ) has an 'exclusive' interview today with Dame Fiona Caldicott. Dame Fiona has been chairing a review - of information governance in health and social care - 'Caldicott2.' Its report and recommendations are due out in just a few short weeks.You have to subscribe to HSJ to read the full interview … Continue reading How a Dame and the Great British Public might bring an end to the patient data pantomime…
Roll-up, roll-up, for the British Library ‘Access to Understanding’ awards event
Next week sees the awards ceremony for the first ever Access to Understanding Europe PMC science-writing competition. You can still get tickets for the awards event here which will take place at the British Library on Monday 11th March from 6.30 to 8.30pm. At the event, there will be a few words from each of the judging panel, … Continue reading Roll-up, roll-up, for the British Library ‘Access to Understanding’ awards event
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