This week I had the good fortune to be on the judging panel for the NIHR Clinical Research Networks/McPin Foundation/MQ 2018 award for service user and carer involvement in mental health research. It was a brilliant field to choose from. The winners will be announced very shortly. One of the reasons I readily take up … Continue reading ‘Sticking with it’ – retention issues in public involvement and health research
BMJ
Getting a GRIPP2 on public involvement reporting in research papers
More often than not, public involvement in research is poorly reported when it comes to the results of studies being written-up in academic papers. That means we - the public, researchers, clinicians and all others involved in doing research - are missing out on the cumulative knowledge and experience of others on 'why,' 'how' … Continue reading Getting a GRIPP2 on public involvement reporting in research papers
When patients help bridge the knowledge gap in health research #clinicaltrials #whywedoresearch #PROMs
This week saw a great editorial by Angela Coulter in the British Medical Journal (BMJ) headlined 'Measuring what matters to patients.' The underlying story may be summed up as follows. The effectiveness of the care or medicines you and I receive every day has been decided by measuring the things that health professionals and researchers have decided are important. Some of these 'measures' … Continue reading When patients help bridge the knowledge gap in health research #clinicaltrials #whywedoresearch #PROMs
Going commando in public involvement in health research
Its probably not the done thing for a National Director to applaud direct action. So I won't. But I couldn't help but warm to the recent appeal by Professor Luke Clements for carers to get in touch with their militant side. Prof. Clements advised the parliamentary committee that looked at the Care Act. In his recent talks around … Continue reading Going commando in public involvement in health research
Blog: Why the NIHR Journals Library is important from a patient perspective
NIHR Journals Library Launch 20th June 2013 As promised here's my speaking notes from the launch of the NIHR Journals Library today. Good to see the Minister, Earl Howe, there (I tweeted his remarks earlier) plus the CMO, Professor Dame Sally Davies, Trish Edwards, Asst Editor from the BMJ etc., Public involvement in UK health research … Continue reading Blog: Why the NIHR Journals Library is important from a patient perspective
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 Reminders that this patient experience malarkey is a serious business
Royal College looks to boost child health research with children’s charter
I am prone to beating up our Royal Colleges for one reason or another. But, over the last few years, I have grown to admire and respect the work of one of their number in particular - the Royal College of Paediatrics and Child Health (RCPCH). Yesterday, RCPCH launched a new report entitled 'Turning the Tide: … Continue reading Royal College looks to boost child health research with children’s charter
And people wonder why we are so passionate about public involvement
There are a few minutes until I catch my train. It is just enough time to draw your attention to this excellent piece in the BMJ written by a patient, Matilda Hale, about her battle with fatigue as a result of liver disease, the complacency of the medical profession and the support she gained from … Continue reading And people wonder why we are so passionate about public involvement
Friday musings about tsars, conferences and stratified medicines
Today I started to think about the forthcoming INVOLVE national conference. More particularly, what I want to say to this important gathering in less than a month's time. This will be my first conference since taking over as Chair in June 2011 and, since then of course, I have also taken on the new National … Continue reading Friday musings about tsars, conferences and stratified medicines
A few more ‘£s’ and I’ll be opening my own Wellcome Collection…just keep those surveys coming
If only petrol was as plentiful a resource as public attitudes. There is no end to the extent to which we can mine what the public thinks about this, or that. Occasionally a survey will hit a rich seam of information and insight. Then again, so numerous are those who are drilling into the public mindset nowadays, that I … Continue reading A few more ‘£s’ and I’ll be opening my own Wellcome Collection…just keep those surveys coming
BMJ talks tough on clinical trial data and the public interest
The BMJ publishes several papers today looking at the harm being done to research, patient care and the public interest by the incomplete disclosure or withholding of clinical trial data. Click here for the BMJ's editorial written by Dr Richard Lehman from Oxford University and the journal's clinical epidemiology editor Dr Elizabeth Loder. An example of the … Continue reading BMJ talks tough on clinical trial data and the public interest
Stop press: the BMJ goes ironic on us while MRC Network steps up
I was alerted to this piece by the excellent MRC Policy Watch bulletin. Great, that looks interesting I thought - a BMJ article about how research papers could be made more readable and interesting. Opening up research to the masses is what I'm all about. Particularly when the strapline is so good: Why do scientists … Continue reading Stop press: the BMJ goes ironic on us while MRC Network steps up
'A nation of General Practitioners' and other bits of philosophising
The news earlier this week that the National Institute of Clinicial and Health Excellence (NICE) is to lose its powers for deciding which drugs should be made available on the NHS (to be replaced by a new system based around GP commissioning) brought an alternative version of Adam Smith's remarks about shopkeepers to mind: "To found a … Continue reading 'A nation of General Practitioners' and other bits of philosophising
Loose ends on Lansley, Godlee and AMRC
Here are a few loose ends from this week if not before. First, I'm delighted that the Journal of Ambulatory Care Management have published our paper about AMRC's 'Natural Ground' project on patient public involvement in their July issue. But I am afraid it looks as though you have to pay to download it. Nonetheless, … Continue reading Loose ends on Lansley, Godlee and AMRC
Eurobarometer on science and technology (England 1 Latvia 0)
For those of you who feel despondent about science's chances following yesterday's Budget think of it this way. We are through the group stages, have conceded little and are now through to the knockout stages where we have everything to play for. We just need to take our chances. Those of you thinking of an … Continue reading Eurobarometer on science and technology (England 1 Latvia 0)
Simon Denegri's Lay Review 