I once told a conference that it was my perception that rare disease communities were in a stronger position to put research at the top of the agenda; that patients, carers, clinicians and researchers found it easier to get around the table in these areas, were able to work more closely together and mobilise for… Read More Understanding why people with rare diseases lose out on research may help those with other more common conditions @rarediseaseday
We live in strange times. Lately I have been watching ‘Deutschland83,’ a wonderful German language spy story set in Berlin. As an 80s child it evokes many memories for me. The music. The fashion. The fear and paranoia of those times when complete annihilation was just the press of a button away. The dogmas of… Read More Are we really in this together?
Is it me or is 2016 ‘full-on’ or what? It is as if someone has put something in our water supply. It’s nearly February already. My good colleagues in public involvement are hitting the sort of productivity levels last seen in a Japanese car factory in the 1990s. Yesterday I blogged about two new ‘manuals’… Read More Top-tips for involving young people in research and other brilliant resources @GenrYPAGs
I didn’t think so. Do you get those nagging calls about PPI? It’s usually early evening. Sometimes it is a recorded voice message. Sometimes a text. Very occasionally it is a real person from the unreal environment of a call centre. Unfortunately they are all contacting me about that other PPI – yes, Payment Protection… Read More Blog: Have you ever knowingly been oversold PPI in research? Then, there’s help at hand #howtoinvolve
I’ve been helping colleagues get this study off the ground so would appreciate your help either in spreading the word or by contributing directly. As follows. ….Are you currently involved in a surgical research trial? If so we need your help! We are looking for patient or lay advisers, partners or representatives to take part… Read More Patients wanted to talk about public involvement in surgical trials #PIRRIST @joannacrocker
It is said that when Robert Sherman sat down to write ‘A Spoonful of Sugar’ he was inspired by his children’s tale of being given their polio vaccine on a sugar cube. The iconic song from Mary Poppins, lyrically captures a moment in time when the relationship between society, medicine and research was a more… Read More Mary Poppins no longer has the answers in medicine – for either doctor or patient
The small things in life can tell us much about how the world is changing. Whether it’s commuters carrying bottles of water. Or the papers left on trains at the end of a journey. What might such tell-tale signs of cultural change be, when it comes to public involvement? Is it the fact that public involvement… Read More There’s nothing wrong in being a poster child for public involvement @bournemouthuni
It’s one of the hardest things they will have to do. It is physically and mentally draining. For many it will feel a lonely place. The atmosphere will be unlike anything they have ever experienced before. Some will feel as if they are in a state of suspended animation. Others will feel as if they have leapt off a cliff… Read More From ‘spacewalking’ patients to Bowie, the literature on public involvement in research reached new Peakes this week
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… Read More The devil’s in the manual – health research regulation and public involvement @HRA_Latest
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… Read More Are you the next Director of INVOLVE?
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… Read More Public engagement in research must break through its rose-tinted glass ceiling #engage_2015
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… Read More Join Dementia Research UK (sort of) Tour Dates
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… Read More There is indeed method in our ‘madness’ – being METHODICAL about public involvement
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… Read More Opening up clinical research to the masses – new online learning course
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… Read More Babraham Institute pins down public attitudes to basic science
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… Read More For what it’s worth: a few brief one-liners on the #NurseReview
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… Read More Blog: How do we stop public involvement in research from becoming a ‘nation of advisory groups?’
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… Read More Research is for LIFE not just for….
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… Read More The Govt’s Accelerated Access ‘Innovation’ Review: mid-term report @AccelAccess #medtech
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… Read More New ‘Research for All’ engagement journal and #PPIpublishing tweet chat coming up