Charity right on Target with patient insights on clinical trials: where are the others?

This evening I have been reading a fascinating report about women with ovarian cancer and their access to clinical trials. Last week, Target Ovarian Cancer published the results of their 2012 Pathfinder Study.  It is an excellent piece of work.  What I like about it is that it digs around issues to do with choice... Continue Reading →

How your NHS Trust works in mysterious ways when it comes to clinical research

Today the NIHR Clinical Research Network Co-ordinating Centre (NIHR CRN CC) has published the results of a 'mystery shopper' exercise it conducted last year to investigate how well NHS Trusts provide information about clinical research.  You may have seen a piece in last Sunday's Observer which trailed this work and you may hear about it... Continue Reading →

Testing, testing: please put Testing Treatments interactive through its paces

With the sort of timing which makes me wonder whether I missed my vocation as a TV scheduler it only seems right that, on the day the House of Commons Science and Technology Select Committee has announced its inquiry into access to clinical trial data, I should ask you to road-test 'TestingTreatments interactive.' 'Testing Treatments interactive' is the... Continue Reading →

Round round get around I get around – Caldicott2, patient data, dementia portal and more!

So sang The Beach Boys who were on Radio 2's 'In Concert' this week.  Not that I'm a great fan but it seemed apposite given my week.  This has involved visits to TrialReach, Oxford (well, virtually!) to discuss plans for public involvement in the Biomedical Research Centre there, my good colleagues at BioMedCentral and, tomorrow,... Continue Reading →

Cancer patient experience survey results show variations in access to clinical trials and research

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 →

Clinical trials activity report for England highlights progress but much work still to be done

The National Institute for Health Research (NIHR) CRN CC has today published its clinical research activity report for the final quarter of 2011/12.  Some of the data and a good summary of what they mean is also available on The Guardian website. Last year was the first that this sort of information was made widely available.  So... Continue Reading →

PLoS ONE study – I’d go further: poor quality information undermines rights of clinical trial participants

On my recent visit to Newcastle, my afternoon was spent talking to, and answering questions from, the public about research.  Clinical trials featured heavily.  The most common theme was their frustration over the poor quality information given to trial participants before, during and after a trial had finished. The journal, PloS ONE, has today published a... Continue Reading →

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 →

There was an online discussion hosted by The Guardian this morning about commercially sponsored clinical trials in the NHS.  You can get the jist here.

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 →

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 →

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 →

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