Making sure that research funded by the NIHR, charities and industry reflects the needs and priorities of patients, carers and the public is one of the most important agendas in public involvement. It has been a focus for much activity over the years with the outstanding James Lind Alliance (JLA) Priority Setting Partnerships (PSPs) being the… Read More NIHR revamps another route for patients, carers and the public to submit their ideas for research
Herewith a copy of the announcement that you will also find on the National Institute for Health Research (NIHR) and INVOLVE websites to day about the award of the new INVOLVE contract. This means INVOLVE now enters its second decade of being fully funded by the NIHR and the only such body of its kind… Read More Announcement of new contract for @NIHRINVOLVE awarded to the University of Southampton
Yesterday I was on a visit to the West Midlands. The University of Birmingham, Birmingham Health Partners and West Midlands Genomic Medicine Centre (GMC) had invited me to talk about public involvement in research strategies for the region. Many organisations and voices were represented in the room. The discussion was lively and, at times, challenging. But… Read More The divide between public involvement in research and service delivery
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… Read More George Osborne clearly read ‘Going the Extra Mile’ before his Budget statement #scipolicy
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
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… Read More Who are the good, the bad and the ugly at involving the public in medical research? New comparative figures for Government, charities and industry
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… Read More Sign-up to help step-up research into dementia: new service enables people to volunteer for research studies #joindementiaresearch @beatdementia
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… Read More Is it time to give patients the opportunity to self-refer themselves to take part in NHS research?
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… Read More Read all about it #WorldMentalHealthDay – Research Special!
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… Read More Ex-offenders take up mantle as peer researchers in pioneering @PenCLAHRC study
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… Read More NIHR looks to go PROACTIVE with plan for research participation and engagement
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
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… Read More NIHR makes plain English summaries a requirement of funding via @NIHRINVOLVE
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… Read More NIHR Friday: BioResource launch has volunteers at its heart
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… Read More Untold stories in clinical research: the carer’s tale
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… Read More Dignity and respect in clinical trials: some thoughts
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… Read More Blog: Local leadership in public involvement in research shows the way
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…’
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… Read More UK Clinical Trials Gateway (UKCTG) now shows open trials by location in early Xmas stocking filler for patients
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… Read More Young people in research have sent me a postcard, have a look….