Announcement of new contract for @NIHRINVOLVE awarded to the University of Southampton

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

The divide between public involvement in research and service delivery

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

George Osborne clearly read ‘Going the Extra Mile’ before his Budget statement #scipolicy

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

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… Read More What next in identifying patient priorities for health research? #JLAevaluation

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… Read More 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… Read More Is it time to give patients the opportunity to self-refer themselves to take part in NHS research?

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… Read More 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… Read More 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… Read More 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… Read More 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… Read More 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… Read More Untold stories in clinical research: the carer’s tale

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… Read More 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… Read More Musings on #patientdata and: ‘the moral case for public involvement in research is dead, long live…’

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… Read More Young people in research have sent me a postcard, have a look….