It is some time since the Chancellor of the Exchequer and I have spoken. Forever, in fact. But I like to think we are in tune on some things.... The Guardian online has an excellent piece running this afternoon - written by Kieron Flanagan from UMIST - about the nods and winks on science policy … Continue reading George Osborne clearly read ‘Going the Extra Mile’ before his Budget statement #scipolicy
NIHR
What next in identifying patient priorities for health research? #JLAevaluation
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 … Continue reading What next in identifying patient priorities for health research? #JLAevaluation
Who are the good, the bad and the ugly at involving the public in medical research? New comparative figures for Government, charities and industry
What should we make of the latest figures from INVOLVE and the Health Research Authority (HRA) showing which funders are best at public involvement in research? In a re-run of an joint-exercise first done in 2010, INVOLVE and the HRA looked at the public involvement component of over 1100 research applications that went before research ethics … Continue reading Who are the good, the bad and the ugly at involving the public in medical research? New comparative figures for Government, charities and industry
Sign-up to help step-up research into dementia: new service enables people to volunteer for research studies #joindementiaresearch @beatdementia
Of all the dementia initiatives announced by the Prime Minister, David Cameron, this weekend it may prove the pivotal one. It may not grab headlines in the same way as £ commitments to research or new institutes (although it is doing pretty well). But, without it, this expenditure will be worthless. For other patient populations it … Continue reading Sign-up to help step-up research into dementia: new service enables people to volunteer for research studies #joindementiaresearch @beatdementia
Is it time to give patients the opportunity to self-refer themselves to take part in NHS research?
Harpal Kumar, the Chief Executive of Cancer Research UK, yesterday posted a blog about the new task force he is leading for NHS England on cancer diagnosis. The aim of the task force is to enable people to get an earlier and speedier diagnosis of their tumour in the future. But it will also be looking at treatment and … Continue reading Is it time to give patients the opportunity to self-refer themselves to take part in NHS research?
Read all about it #WorldMentalHealthDay – Research Special!
In case you have just woken up, today is World Mental Health Day. This year's focus is on schizophrenia but a lot of other things are going on about mental health issues in general. In no particular order, but with thanks to friends and colleagues for sending these to me, here are some interesting things … Continue reading Read all about it #WorldMentalHealthDay – Research Special!
Ex-offenders take up mantle as peer researchers in pioneering @PenCLAHRC study
This is an excellent example of service users being involved in a study as 'peer researchers' and deserves attention beyond the readership of the Plymouth Herald. Engager II might sound like the name of a spaceship but it's actually the name of a study which intends to look at the mental health issues faced by prisoners … Continue reading Ex-offenders take up mantle as peer researchers in pioneering @PenCLAHRC study
NIHR looks to go PROACTIVE with plan for research participation and engagement
Why shouldn't you and I be able to take part in appropriate and relevant research as part of our NHS care and treatment? Why shouldn't we be able to expect to have that discussion with our doctor as part of our diagnosis and care? Why shouldn't we be able to access research evidence so we … Continue reading NIHR looks to go PROACTIVE with plan for research participation and engagement
A brief update on NIHR’s review of public involvement in research
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 … Continue reading A brief update on NIHR’s review of public involvement in research
NIHR makes plain English summaries a requirement of funding via @NIHRINVOLVE
Plain and simply good news from a citizen point of view. With thanks to INVOLVE and NIHR colleagues for making this happen, Plain English summaries in National Institute for Health Research (NIHR) funded research. The National Institute for Health Research (NIHR) is committed to making sure that each research study it funds has a clear … Continue reading NIHR makes plain English summaries a requirement of funding via @NIHRINVOLVE
NIHR Friday: BioResource launch has volunteers at its heart
Delighted to see today's announcement by the National Institute for Health Research (NIHR) of the new NIHR BioResource. The importance of the new BioResource (the main website for the BioResource is here) is underlined by the fact that not one Minister but both the Secretary of State for Health, Minister for Health plus the Chief Medical Officer, Professor … Continue reading NIHR Friday: BioResource launch has volunteers at its heart
Untold stories in clinical research: the carer’s tale
When asked, the National Institute for Health Research (NIHR) will tell you that 630,000 people took part in a clinical study last year. I wonder, however, whether that number should be raised to nearer one million*. For alongside many participants during their journey in research, walks a mother, father, brother, sister or significant other. One … Continue reading Untold stories in clinical research: the carer’s tale
Dignity and respect in clinical trials: some thoughts
Looking at how we can improve the patient experience of being in a clinical trial is something I'll be doing a lot of this year as National Director. It will be one of the objectives of the NIHR strategy to increase research participation that I have just broken off from writing to do this blog. If you … Continue reading Dignity and respect in clinical trials: some thoughts
Blog: Local leadership in public involvement in research shows the way
The massive restructuring of UK clinical research according to new, local boundaries is a regular topic on this blog. My recent post about whether research was ready for the new localism prompted quite a response. I doubted then the willingness of new organisations in this transformation to involve the patient voice. The associated engineering works to … Continue reading Blog: Local leadership in public involvement in research shows the way
Musings on #patientdata and: ‘the moral case for public involvement in research is dead, long live…’
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 … Continue reading Musings on #patientdata and: ‘the moral case for public involvement in research is dead, long live…’
UK Clinical Trials Gateway (UKCTG) now shows open trials by location in early Xmas stocking filler for patients
I once wrote an article for a local rag bemoaning the state of the town's railway station. When, two days later, the council announced plans for its complete redevelopment I expressed my shame and guilt to a friend for not having known this. "Simon," he said after a long pause, "it sounds like a simple case … Continue reading UK Clinical Trials Gateway (UKCTG) now shows open trials by location in early Xmas stocking filler for patients
Young people in research have sent me a postcard, have a look….
The Generation R event - organised and delivered by young people in research - has to be one of the highlights of my year. You can find a write-up from the September event here. Today the Generation R crew sent me a postcard about what is happening next. Note the key messages to emerge from the … Continue reading Young people in research have sent me a postcard, have a look….
Big data, big stage, cue patients as the leading actor. Remarks at #bigdata2013 on the patient agenda
The following is a more polished and slightly amended version [the bits in brackets I didn't say] of the remarks I made at the ABPI/NIHR conference about big data which took place in London yesterday. The title of the conference was: '360 of Health Data - Harnessing big data for better health.' I had written … Continue reading Big data, big stage, cue patients as the leading actor. Remarks at #bigdata2013 on the patient agenda
NIHR gives ‘chapter one and verse’ on patients and the public in research: 2012/13 annual report published
Forgive me. For once, I write with a semi-official hat on. But this afternoon feels like a bit of a milestone moment in lifting public involvement in research ever higher on people's agendas. If you have heard me speak in public then you will know I start by saying how proud I am that the … Continue reading NIHR gives ‘chapter one and verse’ on patients and the public in research: 2012/13 annual report published
@RBandH Guest blog: Promoting Clinical Research Locally – From ‘OK to Ask’ to Research Changed my Life
Promoting Clinical Research Activities and Opportunities Locally – From OK to Ask to Research Changed my Life Mark Terry, Research Office, Royal Brompton & Harefield NHS Foundation Trust (m.terry@rbht.nhs.uk) 2013 has been notable for the strong momentum provided by National Institute for Health Research (NIHR) to NHS Trusts in our efforts to raise awareness of … Continue reading @RBandH Guest blog: Promoting Clinical Research Locally – From ‘OK to Ask’ to Research Changed my Life
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