The results of the annual cancer patient experience survey are out today. For those of us committed to improving patient access to clinical trials and other research, this year's report is particularly interesting. As far as I know, this is the first year that the survey asked patients whether taking part in research had been discussed … Continue reading Cancer patient experience survey results show variations in access to clinical trials and research
patient and public involvement
There is no point to the javelin
It has come to this. The world's top tennis players rush their shots to beat an 11pm curfew. Bruce and Sir Paul are turned-off mid-performance. And they don't use real javelins in schools. Looking across the the athletics field at my sons' school sports day, I spied a clutch of children competing in the javelin. Except this … Continue reading There is no point to the javelin
My key points to the ‘Caldicott 2’ Review of Information Governance earlier today
Actually that's not quite true because, as is not uncommon with these things, the evidence session I attended today was more of a discussion, and a very good one it was too. But I did more or less cover the following points. At the end we were asked to express one wish about what happens … Continue reading My key points to the ‘Caldicott 2’ Review of Information Governance earlier today
The NHS Commissioning Board Draft Mandate and patients in health research
The Shard went up (officially). And the NHS Commissioning Board Draft Mandate came down from on high. All on the same day. Add the odd torrential downpour with its associated misery and these could be Biblical times. I have come to the conclusion that it is my fate to be locked away somewhere remote and with an intermittent … Continue reading The NHS Commissioning Board Draft Mandate and patients in health research
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 The life sciences, the public and the growth agenda…its not just about bums on seats
Are you a patient? Then, I’m holding you for questioning. You have the right to…..
Just in case you had missed it, it's all about patient experience from now on! And a good thing too. Or, at the very least, it seems the intention is to ask people more questions about their experience. A lot more questions in fact. In the new world, I wonder, will we be met by NHS 'chuggers' … Continue reading Are you a patient? Then, I’m holding you for questioning. You have the right to…..
The Academy reports on research regulation…and a reminder of the Guardian’s Q&A about public involvement
The Academy of Medical Sciences (AMS) today published its report of the meeting it held a few months ago, looking at progress with improving the regulatory of environment for medical research. I blogged about being a panellist at the meeting as you may recall. The report's conclusions are noteworthy for the second bullet point about public … Continue reading The Academy reports on research regulation…and a reminder of the Guardian’s Q&A about public involvement
We need more than better chat-up lines to increase participation in research
'Pedestrian freight.' It is a term I had not come across until last week. I believe it is the phrase once used inside train companies to describe you and I, the commuters who throng with fortitude through our stations up and down the land every day. Perhaps it still is, I don't know. Such 'internal' phrases can … Continue reading We need more than better chat-up lines to increase participation in research
NHS research up close and personal: ‘Research People’ site tells the stories behind the story
Returned from half-term leave today thinking that I might write about the latest Care Quality Commission (CQC) patient experience survey. After a while looking at the results I began to think: is there a good reason why there isn't a patient 'out of body experience' survey conducted and published? It might come closer to the … Continue reading NHS research up close and personal: ‘Research People’ site tells the stories behind the story
Government consults on Healthwatch membership
The Government last week launched a public consultation seeking views on the membership of Healthwatch England. Healthwatch England will be the 'consumers champion' under the NHS reforms. It will be what they call a 'statutory committee' of the Care Quality Commission (CQC) and is expected to be up and running by the autumn. Many, including … Continue reading Government consults on Healthwatch membership
You cluster if you want to…the single most important translational gap in UK clinical research today
A colleague of mine put up two slides at a meeting today which neatly encapsulated for me the key strategic - perhaps translational gap - in uk clinical research right now. On the demand side, the first showed the key results from the Association of Medical Research Charities (AMRC) commissioned MORI poll of public attitudes … Continue reading You cluster if you want to…the single most important translational gap in UK clinical research today
Canada gets the ‘patient involvement in research’ bug
A few weeks ago I mentioned meeting the Director of the Canadian Institutes for Health Research (CIHR) to discuss public involvement in research. Last night I stumbled on the following announcement by the Canadian Government about the development of a patient-orientated research strategy. Excellent news. I am sure the news has very little to do … Continue reading Canada gets the ‘patient involvement in research’ bug
From I Claudius to iLansley…phone apps in the new NHS
The summer break has clearly done the Secretary of State for Health, Andrew Lansley, a world of good. From beating a lone path as the libertarian Claudius in the face of a centralised health service, he has resurfaced this week as the man for all seasons to launch a competition for the best ideas for … Continue reading From I Claudius to iLansley…phone apps in the new NHS
Social media leaving doctors and researchers…virtually clinic bound
I suspect this has been picked-up by someone else but an article in the US publication 'Information Week' from 11th July this year provides further data on the rise of social media (twitter, blogs, Facebook etc) as a tool by which patients are seeking and sharing health information. It actually looks at a report by … Continue reading Social media leaving doctors and researchers…virtually clinic bound
Exortic science goes kryptonite, perhaps
Today's headline is taken from the menu for my Indian take away last night which talked of 'exortic sauces.' A spelling mistake it might be but I was rather taken with the idea of my curry sauce exorting me to savour its spices. In a similar fashion do I feel the desire to devour all … Continue reading Exortic science goes kryptonite, perhaps
Democratising research
So I thought you might be interested in my thoughts on innovation and public involvement that I shared with the audience at the PatientsParticipate! conference at the British Library on Friday afternoon. The real star of the show thought was patient advocate, Graham Steele, who gave us an absorbing tour of social media and public … Continue reading Democratising research
‘Scroll down’ for clinical trials
To begin with, here's more on that Pfizer story about use of mobile phone technology etc in clinical trials. It seems to have piqued an interest among many of you anyway. Also on the subject of clinical trials, I was rather perplexed by this story running out of the NHS Confederation this morning. I'm delighted … Continue reading ‘Scroll down’ for clinical trials
International clinical trials day and a bit of mopping-up
It is International Clinical Trials Day today and The Cochrane Library has worked with the UK Medical Research Council's Network of Hubs for Trials Methodology Research to produce a set of new podcasts about clinical trials - well worth a listen. There was a conference in Vienna this morning organised by the European Clinical Research … Continue reading International clinical trials day and a bit of mopping-up
Public attitudes to science survey 2011
Welcome back to those of you who left the rest of us to run the country for two weeks. I must say that I spent the Bank Holiday weekend in a verily good mood having had a quick peek at the results of our annual member survey. This showed that 98% of our members say … Continue reading Public attitudes to science survey 2011
PPI Toolkit
I was rather upset to see a journalist write rather disparagingly about the I-Spy series of books as 'patronising.' Personally I was delighted to hear that they had been relaunched by Michelin. The fact is, in this information-laden world of ours, the value of pocket-sized guides could not be greater. So I was delighted to … Continue reading PPI Toolkit
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