I hope you will have seen or heard the news today of the positive results of a gene therapy trial for people with cystic fibrosis. And this is how The Guardian is reporting it. Although it is early days and the improvement shown in patients only a modest one, it is nonetheless a very hopeful… Read More Cystic Fibrosis Gene Therapy Trial testament to the cf community as a positive, patient and persistent partner in research
I spent yesterday morning at an excellent event looking at the James Lind Alliance Priority Setting Partnerships (JLA PSPs for short!). #JLAevaluation Started in 2004, JLA PSPs have become a recognised and highly respected method for identifying shared priorities in health research among patients, carers and clinicians. That they have is a testament to its founders but also the excellent JLA… Read More What next in identifying patient priorities for health research? #JLAevaluation
Here’s a few things that I’ve been collecting and now seems as good a time as ever to gather them together and share them as one. Researchers may wish to note the following exercise that is running throughout universities and institutions to identify barrier to public engagement. It’s a repeat of an exercise done by… Read More Smash, shrapnel and loose change – a mish mash of news from around public involvement and engagement in health research
Two posts in one day! Ah, those were the days when we got two Post Office deliveries a day…. Just to say the Government has published the full terms of reference for its Innovative Medicines and MedTech Review to be headed up by Sir Hugh Taylor who is currently Chair of Guy’s and St Thomas’s. Yes, that’s… Read More Government pushes forward with review to speed up availability of innovative medicines and treatments
Today the All-Party Parliamentary Group for Medical Research holds its summer reception in parliament. This annual event has become an important fixture on the health research calendar. The ‘great and the good’ assemble to focus on a key issue of the day and to network. At some point in proceedings they will be addressed by… Read More Spend £1 on cancer research and get 40p back every year: what’s not to like?
We have just passed the mid-way point in the ‘evidence-gathering’ phase of NIHR’s strategic review of public involvement entitled ‘Breaking Boundaries.’ So here’s an unofficial Chair’s view. The announcement of the review on 31st March, its terms of reference and our initial call for views can be found on NIHR’s website here People can at the… Read More A brief update on NIHR’s review of public involvement in research
What is, I wonder, the equivalent of Noel Coward’s lyric ‘only mad dogs and Englishmen go out in the midday sun,’ which might encapsulate the phenomenon that is the Virgin Money London Marathon? This morning tens of thousands of runners will set out from Greenwich Park as they do every year with high hopes of finishing two, three, four… Read More The medical marathon; a piece to mark the #LondonMarathon2014
Over the last few months, I have been noting down charity advertising copy as I go about London. Here are ten. Notice any trends? Diagnosed with blood cancer, Chloe only has one hope…YOU. Text HOPE…. Anthony Nolan Trust 2013 Elliot is deafblind. He can’t tell it’s Christmas. Text TOY to….Sense Help us beat cancer sooner… Read More Fight the good fight: medical research charity advertising slogans
The fundamental issue at stake here is respect for the citizen. The last month of debate about care.data feels like the previous ten years of discussion about the sharing of personal data bottled as a concentrate solution of ill-temper or should that be distemper? Many will say that NHS England – who yesterday announced a… Read More Comment: So what next for care.data?
The charity Pancreatic Cancer Action have caused a storm with their new ‘cancer envy’ advertising campaign in which patients are pictured saying things like: ‘I wish I had breast cancer.’ So if it’s shock tactics they were after, and public attention to go with it, then they must be delighted. As must the advertising company… Read More My view on that pancreatic cancer ad campaign
There’s a big push on #patientdata at the moment. Leaflets explaining how patient data will be shared in the future are being stuffed through people’s letter boxes. This is part of an initiative called ‘care.data.’ Medical research charities have meanwhile funded a national newspaper advertising campaign exhorting the benefits of sharing patient data for research. The… Read More Musings on #patientdata and: ‘the moral case for public involvement in research is dead, long live…’
….despite the temptation. Summer means many things for me. One of them is keeping track of the football transfers. Here’s hoping that the Eagles do manage to persuade Ronaldo to South London! The comments that managers make about players never cease to amuse me. One of the most common goes something along the lines of: ‘He’s… Read More Clinician resistance to research may require an arm around the shoulder not a red card
I am sure the new Health Research Authority (HRA) can take care of itself. But the expectations being heaped on it by others show no signs of abating. I wouldn’t be surprised if tomorrow someone calls on it to cure cancer. If it had been created by a Blair Government it would surely have been… Read More Political spotlight on Health Research Authority (HRA) intensifies
‘They can’t write for toffee.’ ‘They’ being scientists of course. But like most generalisations, this statement is utter tosh. You only had to be at the ‘Access to Understanding’ awards (#A2UComp) at the British Library on Monday night to realise that. The lay summaries that I and my fellow judges had been asked to review… Read More The lay summary is dead, long live the lay summary (#A2UComp)
First, a brief history of time in the Europe Union (EU). It goes slowly. That’s it! For the last two years or so the European Commission has been consulting on plans to revise the European Clinical Trials Directive. The Directive has been in force since 2001. Researchers hate it. To be fair so do many… Read More At last! A patient-centred statement on the proposed EU Clinical Trials Regulation
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:… Read More Royal College looks to boost child health research with children’s charter
Public involvement in research: would you like that shaken or stirred? So, ladies and gentlemen, there I was on Saturday afternoon, at the pictures, watching the new James Bond movie, ‘Skyfall.’ This was background research for today you understand; listening to Adele dolefully sing: ‘This is the end’ which is the opening line of the… Read More Text of speech to INVOLVE 2012 – Public involvement in research: would you like that shaken or stirred?
My thanks to the Diabetes Research Network (DRN) for sending me their report ‘Improving public awareness of clinical research.’ Clinical research networks are at the ‘front-line’ in terms of encouraging people to take part in research and this report gives a good insight into some of the tools and strategies used by DRN. Others trying to… Read More Diabetes and cancer network reports on engaging people about clinical research 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,… Read More Round round get around I get around – Caldicott2, patient data, dementia portal and more!
If contemplating NHS change rest assured, and this from one who once visited Mt Etna, that the lava does solidify, some old structures do survive, and it is possible for new ones to be built with solid foundations. Herewith some new and some not so new ‘kids’ on the block in the world of research.… Read More New science networks herald more fertile ground for health innovation