I thought that people might be interested in this report from the Health Service Journal (HSJ) of a speech that Dame Fiona Caldicott made at the Health In4matics conference earlier this week. She discusses the challenges for GPs in providing patients with online access to their medical records. I heard this week that the Department … Continue reading Health Information Governance Review: Caldicott at Health In4matics
Author: simondenegri
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
New paediatric research facility opens at Alder Hey
A new paediatric clinical research facility has opened today at Alder Hey Hospital in Liverpool. Funding has come from the university, an Alder Hey appeal, and the National Institute for Health Research (NIHR). A very important development for children and their parents and the region's growing profile as a hub of nationwide efforts to improve child health. Click … Continue reading New paediatric research facility opens at Alder Hey
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
Exploring the partnership between patients and researchers – photography exhibition at UCH, London.
If you are at a loose end between now and the end of June, then this exhibition at the Street Gallery of University College Hospital looks well worth the visit. Award winning photographer Clare Parks joined forces with researchers and patients to explore their feelings about clinical research in photographs. The images are really quite … Continue reading Exploring the partnership between patients and researchers – photography exhibition at UCH, London.
DH and charities reach acoRD over medical research costs
Divvying up the costs of conducting research in the NHS funded by medical research charities is an intricate business. Who pays for that research nurse, their time in administering the extra treatment required in a clinical trial, the procedures and equipment needed as part of its conduct, the oversight and governance needed to ensure that things are done … Continue reading DH and charities reach acoRD over medical research costs
US congressman tries the legislative route to ending bias in clinical trials reporting
The weekend beckons but given the 'transparency' theme to the week here is something to ponder. US Congressman Tom Reed has tabled a bill in the House of Reps with the purpose of strengthening the reporting requirements on clinical trials so that negative and positive trial results are published. It is being supported by the Cancer Mission2020 lobby … Continue reading US congressman tries the legislative route to ending bias in clinical trials reporting
How evidence empowers consumers…from the Cochrane Collaboration
The Cochrane Collaboration has just launched a new website which explains how systematic reviews work, and the ways in which consumers can use the Cochrane reviews to inform decisions about their own health. Entitled 'YourHealthNet' there are some very honest and candid appraisals of the usefulness of Cochrane reviews, how the evidence can be both empowering but also … Continue reading How evidence empowers consumers…from the Cochrane Collaboration
I can see a role for Oprah, Richard and Judy when it comes to open access scientific publishing
It would seem we are one step closer to 'open access scientific publishing.' How big or small that step will be, we do not know yet. Yesterday we saw a classic bit of Ministerial sounding out of the community on one or two emerging ideas, when the Science Minister, David Willetts, spoke to the Publishers Association . If the … Continue reading I can see a role for Oprah, Richard and Judy when it comes to open access scientific publishing
All this talk of prescribing errors reminds me…..
Today's report by the General Medical Council about prescribing errors makes salutary reading. If I have one criticism about it, it is that, as far as I can see, the research they commissioned focused on the views of GPs and their immediate colleagues, less so if at all on the patient perspective. Are we hearing only … Continue reading All this talk of prescribing errors reminds me…..
What do we know about loneliness?
The author, Robert Frost, once said: 'One aged man - one man - can't fill a house.' It's estimated that over 50% of older people in the UK live alone and if you want some insight into the social issues raised by this you might want to begin by reading this report of a recent … Continue reading What do we know about loneliness?
Behavioural matters: pharma could learn its way out of its ‘slump’ by working more closely with patients
I thought this short piece by David Shaywitz in US Forbes Magazine was terrific. David examines three problems identified by the pharmaceutical industry as holding them back, and proposes solutions to each. The first seems to follow on neatly from my blog on Saturday which looked at the venture philanthropy tactics being pursued by charities to … Continue reading Behavioural matters: pharma could learn its way out of its ‘slump’ by working more closely with patients
Spirit of ad-venture shown by charities in funding drug research or a sign of desperate times?
From The Economist in New York, a short but interesting piece on the growing collaboration between charities, pharmaceutical and biotech companies in the US to bring new drugs to market. More specifically it looks at the 'venture philanthropy' model being adopted by charities there to support clinical trials. I'm not quite sure I'd characterise it as … Continue reading Spirit of ad-venture shown by charities in funding drug research or a sign of desperate times?
The public interest argument must extend beyond open access…here’s a sort of lay summary
Good Guardian blog yesterday giving a lay summary of the 'open access' debate vis a vis papers published in scientific journals. There's also been a healthy exchange of letters in The Times this week but ironically that's behind their paywall. However, at least The Times is available in all good newsagents at a reasonable price. Unsurprisingly, I … Continue reading The public interest argument must extend beyond open access…here’s a sort of lay summary
Local slant on the new NIHR School for Public Health Research
Just thought it would be good to put a local slant on a national story - the establishment, as from today, of the new NIHR School for Public Health Research This from Plymouth (Peninsular Medical School), one of the eight centres around the country involved. They must have very good PR people down there because they … Continue reading Local slant on the new NIHR School for Public Health Research
From analogue to digital patients – or how to avoid being trapped in the ‘mash-up’
If I didn't know from all the media coverage that the digital switchover was taking place in London today, then I would only have to look over my back fence into Crystal Palace Park to see them preparing for the laser show tonight at the Crystal Palace Tower. It explains the weeks of helicopters hovering … Continue reading From analogue to digital patients – or how to avoid being trapped in the ‘mash-up’
Help set the agenda in cancer research….
The National Cancer Research Institute (NCRI) is on a recruitment drive for consumers (patients, carers, relatives and members of the public affected by cancer) to join one of their Clinical Studies Groups (CSGs). These Groups are pivotal in driving new ideas and setting the agenda for cancer research so a patient voice is essential. There are ten … Continue reading Help set the agenda in cancer research….
Regulators push openness agenda on raw trial data…and EUPATI issues call for examples of educational materials on medicines development
Yes, that is a long headline is it not? PharmaTimes and others cover a paper in PloS Medicine authored by a number of medicines regulators including the European Medicines Agency (EMA), calling for openness in raw trial data. The three pronged approach they suggest looks like a good basis for discussion. It would be interesting … Continue reading Regulators push openness agenda on raw trial data…and EUPATI issues call for examples of educational materials on medicines development
INVOLVE Strategy 2012-2015 published
INVOLVE - the national advisory group for the promotion and advancement of public involvement in research - has published its strategy for 2012-2015. See the INVOLVE website for more details. Work on the strategy began last summer - just as I became INVOLVE's Chair - and I am very excited about setting to work to deliver this … Continue reading INVOLVE Strategy 2012-2015 published
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
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