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 →
A town hall meeting in Camden held a mirror up to public engagement British style and it wasn’t pretty
I was at Camden Town Hall on Monday night with a couple of hundred other citizens. We came together to talk about clinical research and I got a real kick out of it. The occasion was the first ever 'Clinical Research Education Event' held in the UK by the American non-profit organisation, the Centre for... Continue Reading →
Understanding why people with rare diseases lose out on research may help those with other more common conditions @rarediseaseday
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... Continue Reading →
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 →
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 →
Review of public involvement in NIHR published #ppiextramile
Hot off the presses: Almost a year to the day that the Director General Research and Development/Chief Medical Officer commissioned a strategic review of public involvement in the National Institute for Health Research (NIHR), the final report and recommendations have today been published. Simon Denegri, the National Director for Patients and the Public in Research... Continue Reading →
Who are the good, the bad and the ugly at involving the public in medical research? New comparative figures for Government, charities and industry
What should we make of the latest figures from INVOLVE and the Health Research Authority (HRA) showing which funders are best at public involvement in research? In a re-run of an joint-exercise first done in 2010, INVOLVE and the HRA looked at the public involvement component of over 1100 research applications that went before research ethics... Continue Reading →
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 →
A pox on www! Has the humble website become the public engagement tool of choice for the lazy scientist?
Or should that be a pixel! If you want a brief but mind-boggling, diversion from the tedium of your day then look no further than 'internet live stats' which shows the number of website, blogs, tweets and other social media stuff being created every second of every day. Into this miasma do our scientists, research... Continue Reading →
UK Clinical Trials Gateway (UKCTG) now shows open trials by location in early Xmas stocking filler for patients
I once wrote an article for a local rag bemoaning the state of the town's railway station. When, two days later, the council announced plans for its complete redevelopment I expressed my shame and guilt to a friend for not having known this. "Simon," he said after a long pause, "it sounds like a simple case... Continue Reading →
INVOLVE cleans-up on standards for public involvement in research
The debate about standards for public involvement in research is an important one. As a community we are growing in number by the day. So is the range of activities that we are involved in. And the number of organisations we are part of. The resulting variety is rich and exciting. There are those of us who... Continue Reading →
NIHR gives ‘chapter one and verse’ on patients and the public in research: 2012/13 annual report published
Forgive me. For once, I write with a semi-official hat on. But this afternoon feels like a bit of a milestone moment in lifting public involvement in research ever higher on people's agendas. If you have heard me speak in public then you will know I start by saying how proud I am that the... Continue Reading →
Moorfields research team reports on benefits of public involvement to eye patients and staff
Sometimes it is the lot of the blogger to feel like the producer of 'Have I Got News For You.' One's research can taken you to all sorts of places you didn't know existed. Then again it can also turn up some gems. This morning I blogged about the WHO report on medicine priorities and... Continue Reading →
@SDenegri presentations about the public and health research from Leicester, HSRN and Leeds
I'm always very chuffed when people ask for a copy of my presentations after a talk. Usually I am quite good at emailing them to people or asking the organisers to send them round. Anyway, I have done a lot of meetings lately and thought I would post here copies of my slides from the... Continue Reading →
I’ll be honest, I’m in two minds about the Royal Institution (RI) issue.
Last week news broke that the Royal Institution (RI) is looking for buyers for its hallowed Albermarle Street headquarters in London as part of a plan to ease its financial woes. These amount to £7million owed to creditors according to various reports. There's plenty of coverage of the affair in the UK media and a campaign... Continue Reading →
Reminders that this patient experience malarkey is a serious business
I don't know about you but I'm nervously awaiting the results of my 'family and friends test' from Christmas and the New Year. I was feeling ok about it. Then a friend of mine suggested a good result may not be a 'good result' at all: it might actually be a perverse and calculated attempt by my nearest and... Continue Reading →
Diabetes and cancer network reports on engaging people about clinical research and more…
My thanks to the Diabetes Research Network (DRN) for sending me their report 'Improving public awareness of clinical research.' Clinical research networks are at the 'front-line' in terms of encouraging people to take part in research and this report gives a good insight into some of the tools and strategies used by DRN. Others trying to... Continue Reading →
Patients, David and Sally, talk about their part in the Parkinson’s Monument Discovery Project
At the UK Dementia Research event last week, I got chatting to Professor Richard Wade-Martins who is Principal Investigator at The Oxford Parkinson's Disease Centre. This was in the queue for the cloakroom I should add, and following my witterings during the afternoon panel session. Richard leads a five year programe of research in Parkinson's disease at... Continue Reading →
The life sciences, the public and the growth agenda…its not just about bums on seats
This is an extract from a talk I gave on Monday to the Faculty of Medical Sciences at the University of Newcastle. I tried to answer the following question: The life sciences are seen as fundamental to the nation’s health and to economic growth. But what is the public’s role in making this happen? The... Continue Reading →
Oldham CCG’s Fairness Commission – one approach to public involvement in the new NHS
I hadn't seen this before...no doubt I am one of the last, as usual. It is an article by Dr Ian Wilkinson, the accountable officer for Oldham Clinical Commissioning Group (CCG), which appeared in Pulse magazine. He describes their approach to public involvement with particular reference to the establishment of a 'Fairness Commission.' The Commission's report can... Continue Reading →
