If you are interested in the EU Directive on Information to Patients, known colloquially in La Grande Place as 2001/83/EC, then this article from InPharm which went online this afternoon will get you up to speed with the latest changes made by the European Commission. The most significant of the three recent changes seems to … Continue reading European Commission makes further changes to Directive on Information to Patients
Author: simondenegri
The ALOIS Community: carers and the public decoding Alzheimer’s disease
On Tuesday I tweeted from the invoNET workshop I was Chairing, about some of the fabulous studies of public involvement in research being showcased during the day. I highly recommend you visit the website invoNET to discover more about - and join - the burgeoning evidence and community in this field. As is typical on such days, … Continue reading The ALOIS Community: carers and the public decoding Alzheimer’s disease
Pro-research NHS Trusts talk in-depth about their challenges and opportunities
After my little rant yesterday about health research culture and public involvement, it seems only appropriate to share with you the following in the interests of journalistic balance. The latest NIHR Clinical Research Network (CRN) newsletter, aptly called 'News from the Network,' is a special edition featuring in-depth features on the NHS Trusts who were … Continue reading Pro-research NHS Trusts talk in-depth about their challenges and opportunities
The health research culture will have changed when no one looks at their shoes embarrassed at the mention of public involvement
If you were not invited to No 10 Downing Street yesterday, then you could have trotted along to the event jointly organised by the Academy of Medical Sciences, Cancer Research UK and the Wellcome Trust to discuss and debate the environment for UK health research. This was really a chance to discuss progress on changing … Continue reading The health research culture will have changed when no one looks at their shoes embarrassed at the mention of public involvement
BriTROC ovarian cancer initiative an exemplar of UK research strengths and of things to come
Yesterday Ovarian Cancer Action announced funding of a new research collaboration - 'BriTROC' - aimed at developing 'a high-quality nationwide tissue and bio specimen bank.' The bank will enable research looking at the molecular characteristics of tumours that recur despite treatment — an important area of unmet need in the field. All the above is from the press release. … Continue reading BriTROC ovarian cancer initiative an exemplar of UK research strengths and of things to come
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
Cancer Research UK report on impact of EU Clinical Trials Directive
Last week Cancer Research UK made one of its regular forays to the European Parliament to launch a new report about the impact of the EU Clinical Trials Directive. As you may know, the Directive is being reviewed by the EU institutions with a view to amendment, and the UK medical research lobby has … Continue reading Cancer Research UK report on impact of EU Clinical Trials Directive
Social media and medical research, a story from Oz
I am in international mood today. From the United States to Australia. Unfortunately not via Hawaii. This was sent to me this morning and it's basically a report of a paper appearing in the Journal of Internet Medical Research about the viability of using social media in medical research. Interesting snapshot discussion around the pitfalls - i.e. … Continue reading Social media and medical research, a story from Oz
“I thought, if nothing else comes out of this, I might be of service to other people” – ‘The Big C,’ NPR and clinical trials talk
Image via WikipediaTo begin with, this blog was going to be about the portrayal of clinical trials in popular drama, inspired by the current US show 'The Big C.' The latest episode runs on More4 tonight at 10pm. If you haven't seen it, then I strongly recommend a viewing. It is well-written, honest - to the point of sassy at … Continue reading “I thought, if nothing else comes out of this, I might be of service to other people” – ‘The Big C,’ NPR and clinical trials talk
The duty falls on all of us to issue that wake-up call to the NHS about its research mission
Last week, medical research charities among others hailed a series of Government amendments made to the Health and Social Care Bill. These place 'a strong duty across the Secretary of State, the NHS Commissioning Board and Clinical Commissioning Groups to promote research and the use of research evidence.' The amendments are in response to persistent lobbying; their … Continue reading The duty falls on all of us to issue that wake-up call to the NHS about its research mission
Social care research opportunities
We don't talk nearly enough about social care research. I sometimes wonder whether we have 'over-medicalised' the health research agenda at times, so that all we shout about are new medicines and treatments - me included. It is a trend that seems counter to the needs of our society and also the changes in the … Continue reading Social care research opportunities
EU initiative to boost information for patients on medicines development
The EU economy might be splintering apart. But, meanwhile, a number of patient/public/private organisations are 'euro-zoning' in on the task of providing better information for patients on medicines development. The new initiative - which was launched on 1st February - is called the European Patients Academy on Therapeutic Innovation or EUPATI for short. Thank goodness they did … Continue reading EU initiative to boost information for patients on medicines development
Michael J Fox? Hugh Grant? Thom Yorke? Who’s next to enter ‘clinical trials get me into it?’
Great launch last night for healthtalkonline's new clinical trials modules in which parents and young people talk about their experiences, warts and all. I think the next module in the offing is on 'Biobanking' with quite a few more in development. It is a strange but true and rather brilliant fact that the actor Hugh … Continue reading Michael J Fox? Hugh Grant? Thom Yorke? Who’s next to enter ‘clinical trials get me into it?’
Scottish independence and what it could mean for science
So last week I pondered vacuously on the question of what Scottish independence might mean for science. Research Fortnight today have an interview with Scotland's new Minister for Science, Alasdair Allan, which begins to address the issue.
Research impact: One small tweak for HEFCE, one important nod to public involvement
The Higher Education Funding Council for England (HEFCE) yesterday issued the final criteria and working methods for its Research Excellence Framework (REF) assessment exercise. The research press is still full of various academic voices continuing to rant against the whole issue of HEFCE assessing 'research impact' for the first time. Seems to be a waste … Continue reading Research impact: One small tweak for HEFCE, one important nod to public involvement
Ill-informed consent: EU meeting lays into clinical trials small print for patients
Image by erjkprunczyk via FlickrDaniel Cressey at Nature has written this report from last week's meeting of the European Forum for Good Clinical Practice which took place in Brussels. The basic thrust of the discussion at the meeting was that information given to patients prior to them signing up for a clinical trial: is often vague, too long, … Continue reading Ill-informed consent: EU meeting lays into clinical trials small print for patients
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
That article about patient questionnaires: the NHS ain’t no Argos
This article in The Guardian about how the NHS has much to learn from the retail sector in the way it designs and uses patient questionnaires has prompted a lot of angry comment. To be fair, it makes one or two good points. These include the fact that we are too slow in incorporating patient … Continue reading That article about patient questionnaires: the NHS ain’t no Argos
I’ve got a pile of irony to do tonight – from Scottish independence to NHS reform
On my train journey from Edinburgh this morning, I listened to a BBC Radio Scotland phone-in about the implications of Scottish independence. The intricacies of a possible de-coupling from the UK are fascinating - from the economy to people's pensions, to the NHS. I've yet to read an article written specifically about the pros and cons … Continue reading I’ve got a pile of irony to do tonight – from Scottish independence to NHS reform
Share your experience of public involvement in research: INVOLVE 2012 Conference call for presentations
Doing this remotely so apologies if this doesn't work/come out very well: INVOLVE 2012: Putting people first in research Conference call for presentations is now open Our eighth biennial INVOLVE conference will take place on 13th and 14th November 2012 at the East Midlands Conference Centre in Nottingham. The conference will bring together members of the public, service users, researchers, research … Continue reading Share your experience of public involvement in research: INVOLVE 2012 Conference call for presentations
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