It being half-term you can never have enough travel games on hand. Current favourites for me are: a) guessing who will be the new Director of the Wellcome Trust and; b) thinking of a name for the body created if you merged all the current Research Councils into one. I did apply for the former … Continue reading ‘Best left alone’ is not the motto we want for our health regulators
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 Charity right on Target with patient insights on clinical trials: where are the others?
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 How your NHS Trust works in mysterious ways when it comes to clinical research
Recently I decided to 'Follow' as many of the NHS organisations (Trusts, CCGs etc) as I could find on Twitter. The main reason was that as we ratchet up what we do around the patient access to research agenda in the New Year, I thought it would be good to begin to make connections on … Continue reading Research in the NHS: I couldn’t put it better than Cumbria Partnership NHS Trust
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 Testing, testing: please put Testing Treatments interactive through its paces
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
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 Round round get around I get around – Caldicott2, patient data, dementia portal and more!
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
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 Clinical trials activity report for England highlights progress but much work still to be done
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 PLoS ONE study – I’d go further: poor quality information undermines rights of clinical trial participants
This from the Dorset Echo about Dorset County Hospital's very simple approach to promoting the importance of taking part in clinical trials on International Clinical Trials Day yesterday. Happy to post other examples if people have any.
The Guardian has just put up on its website details of the live Q&A about public engagement in research that it is holding at lunchtime on Thursday 24th May (that's this week). Good line-up for the panel and rather excited about it. The link above also includes details of how to follow the discussion live … Continue reading Details of The Guardian live Q&A on public engagement in research now available
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
'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
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
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.
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
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
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
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?’