When I was growing up I used to help my Dad do DIY around the house. Our perennial companion was a thick, hard-bound manual with step-by-step guides on how to do anything and everything. No job was too big or too small for it. From replacing a chimney stack to changing a plug. Dad passed … Continue reading The devil’s in the manual – health research regulation and public involvement @HRA_Latest
Author: simondenegri
Are you the next Director of INVOLVE?
A Happy New Year to you all. Here's to your very good health and much happiness in 2016. I am no futurologist so my predictions for public involvement in health research over the next 12 months should be taken with a pinch of salt. However, I do know one thing. The appointment of the new Director of … Continue reading Are you the next Director of INVOLVE?
Public engagement in research must break through its rose-tinted glass ceiling #engage_2015
On Wednesday a consortium of 15 research funders and Universities UK led by the Wellcome Trust published its report 'Factors affecting public engagement by researchers.' The Wellcome Trust launch website is here and the report itself can be found here. It's an important piece of work; a 'state of the nation' commentary on public engagement activity across … Continue reading Public engagement in research must break through its rose-tinted glass ceiling #engage_2015
Join Dementia Research UK (sort of) Tour Dates
If, like me, you missed out this morning on getting tickets to see Adele then fear not. Something much better is coming your way. Join Dementia Research - the website which enables people with dementia, carers and healthy volunteers to register to take part in research - is going on tour. A Join Dementia Research … Continue reading Join Dementia Research UK (sort of) Tour Dates
There is indeed method in our ‘madness’ – being METHODICAL about public involvement
Polonius: [Aside] Though this be madness, yet there is method in't. Hamlet Act 2, scene 2, 193–206 If you are in some way connected to public involvement in health research then you get used to 'the look.' Sometimes it's a vacant stare or a gaze falling slowly across the face like the sun going down. In other instances … Continue reading There is indeed method in our ‘madness’ – being METHODICAL about public involvement
Opening up clinical research to the masses – new online learning course
I thought this was worth sharing.... The University of Leeds, Future Learn, National Institute for Health Research Clinical Research Network (NIHR CRN) and the CPD Certification Service have launched a free online course about how clinical research works. And it's going hot cakes with 8000 people having already signed up since its launch on 3nd … Continue reading Opening up clinical research to the masses – new online learning course
Babraham Institute pins down public attitudes to basic science
Public dialogue exercises can come across a bit like the public engagement version of a 'lock-in.' They are undoubtedly enjoyable - for all concerned including the participants. However, there can be a feeling that people are being force-fed information until they recant their ways! That said, this tool (of choice, for many) is a useful way of exploring people's views on issues in-depth and over … Continue reading Babraham Institute pins down public attitudes to basic science
For what it’s worth: a few brief one-liners on the #NurseReview
Just been reading the Nurse Review of the Research Councils which was delivered to the Government this week a bit like your newspaper is delivered to your hotel room, silently and under the door. The Review's terms of reference are admittedly narrow. But you've got to wonder about a Review: Where half the Foreword is … Continue reading For what it’s worth: a few brief one-liners on the #NurseReview
Blog: How do we stop public involvement in research from becoming a ‘nation of advisory groups?’
We are a 'nation of shopkeepers.' So said Napoleon (allegedly), disdainfully about the English, twisting the words of the political philosopher, Adam Smith. You could be forgiven for saying the same about public involvement in research. Sometimes it feels as if the 'advisory group' - in all its guises - has become ubiquitous across health … Continue reading Blog: How do we stop public involvement in research from becoming a ‘nation of advisory groups?’
Research is for LIFE not just for….
What a shame that the Economic and Social Research Council (ESRC) has pulled the plug on the LIFE study. See: http://www.theguardian.com/society/2015/nov/01/life-study-esrc-cancelled-mothers-ethnic-recruitment Also: http://www.nature.com/news/massive-uk-baby-study-cancelled-1.18650 Launched only last year, the aim of this research was to recruit thousands of mothers and collect data about their babies as they grew up. Such work is really important in helping … Continue reading Research is for LIFE not just for….
The Govt’s Accelerated Access ‘Innovation’ Review: mid-term report @AccelAccess #medtech
Having sensibly bought itself another 6 months to do the work, last week the Government's 'Accelerated Access Review' published its half-term report. Headed by Sir Hugh Taylor the review is looking at how to get new treatments and technology in the hands of patients quicker. It is an important review and all the better for … Continue reading The Govt’s Accelerated Access ‘Innovation’ Review: mid-term report @AccelAccess #medtech
New ‘Research for All’ engagement journal and #PPIpublishing tweet chat coming up
It's good to see public engagement get the attention it deserves in the academic press at last. This includes getting journals of its own. There are now two. Research for All: Universities and Society is a new journal I am involved in which is looking at the role public engagement (note this is the term … Continue reading New ‘Research for All’ engagement journal and #PPIpublishing tweet chat coming up
What’s your earliest memory of public involvement in research?
Rarely a week goes by without the news reporting that archaeologists have found skeletal remains or cave paintings which tell us something new about the evolution of man. Each finding, we are told, means we must readjust our thinking about how we have developed as a species. From the moment we first walked, to that … Continue reading What’s your earliest memory of public involvement in research?
Public involvement: let’s speak honestly, we may need to lose some baggage to face the future
This week I am doing some talks in Perth, Western Australia. This evening I spoke at an event hosted by ‘Involving People in Research’ based at the University of Western Australia. They and their leader, Anne McKenzie, have rightly gained an international reputation for their leading work in public involvement which goes back to 1998. … Continue reading Public involvement: let’s speak honestly, we may need to lose some baggage to face the future
‘How many patients does it take to change a lightbulb?’ Time to get serious about learning and development in public involvement
Question: How many patients does it take to change a lightbulb? Answer: No one knows, they are so rarely asked. The irritating thing is that even when patients are asked to change a lightbulb, they are not given the help and support to do it effectively. It's a bit like asking someone to change one … Continue reading ‘How many patients does it take to change a lightbulb?’ Time to get serious about learning and development in public involvement
Excellent new guidance published to help charities and pharma work together with the public’s trust @ABPI_UK @NVTweeting
It's high time we got over it. Pretending it doesn't go on is foolish. Suspecting the worst every time they come near to one another is energy-sapping. No one is trying to deny history. But we are in danger of denying others a future if we continue to stand in their way. I mean, of … Continue reading Excellent new guidance published to help charities and pharma work together with the public’s trust @ABPI_UK @NVTweeting
Blog: We are with you, robots. Patient Intelligence has often been branded dangerous too.
Experts have warned that it could be one of the most dangerous developments of modern times. Scientist Imnot Kidding told the BBC today: 'I can't emphasise how frightening the future could become if we allow patients to think for themselves. They have all the data we need to outsmart us in the future, to literally … Continue reading Blog: We are with you, robots. Patient Intelligence has often been branded dangerous too.
Patients and researchers – sparring partners not hostile combatants
I am in Helsinki, Finland, for a few days this week, sitting on a review panel for the 'Joint Programme - Neurodegenerative Disease Research.' It is the first time that this programme has involved patients in its review process for funding research so it feels a bit of a milestone moment. This, after twelve months, of … Continue reading Patients and researchers – sparring partners not hostile combatants
NIHR revamps another route for patients, carers and the public to submit their ideas for research
Making sure that research funded by the NIHR, charities and industry reflects the needs and priorities of patients, carers and the public is one of the most important agendas in public involvement. It has been a focus for much activity over the years with the outstanding James Lind Alliance (JLA) Priority Setting Partnerships (PSPs) being the … Continue reading NIHR revamps another route for patients, carers and the public to submit their ideas for research
What next for the BBC: ‘Science in Need?’ #BBC #sciencefunding
Yes, wouldn't it be great if the BBC did indeed launch 'Science in Need?' Then, for the first time in history, we could have a public broadcaster encouraging us to 'SIN' and be SINNERS with our donation to science. There is something rather beautiful but perhaps also tendentious about the juxtaposition of yesterday's launch of the BBC's new … Continue reading What next for the BBC: ‘Science in Need?’ #BBC #sciencefunding
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