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 […]

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 […]

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 […]

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 […]

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 […]

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 […]

@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 […]

CMO as good as her word on young people’s involvement in research

The Chief Medical Officer, Professor Dame Sally Davies, published her annual report today. Actually, it’s two reports. The first is the usual state of the nation summary of the population’s coughs and splutters. The second, uniquely this year, looks in depth at the worrying lack of attention we have paid to young people’s health. It’s […]

Exclusive preview! UK clinical research gets its own TV show…..Downtown eat your heart out @NIHRCRN

So here’s something to make your crumpet and jam just a bit more palatable on Sunday afternoon…Thanks to NIR CRN. This week Health Sector TV will be broadcasting a programme entitled ‘Clinical Research: Making Patients and the NHS Better.’ The blurb says that this is ‘an important new documentary highlighting how the Clinical Research Network (as […]

CLAHRCs could be the superheroes in quality improvement for patients in the UK

Yesterday my day began in Clerkenwell meeting with the new charity, MQ Transforming Mental Health (www.joinMQ.org). It is exciting to feel that we might at last be on the verge of seeing a strong charity profile in mental health research in the UK. But more baffling than ever why our existing mental health charities – […]

NIHR and ABPI conference in November on ‘big data’

Click here for details of a National Institute for Health Research (NIHR) and Association of British Pharmaceuticals Industry (ABPI) joint conference on harnessing big data for health gains.  Takes place in London on 21st November. The more it is used the more I dislike the term ‘big data.’  I mean, how to alienate your public in […]

Take part in a live trial now as part of NIHR’s visit to the British Science Festival #NIHRCOMETtrial

I hope you’ll forgive the fact that what follows is the news release but I am part of the team presenting with Jonathan Sheffield at next week’s British Science Festival and I really couldn’t put it better than this.  The ‘live trial’ is very exciting indeed and the first dip in the water for a […]

New webinar series on public involvement in adult social care @NIHRINVOLVE @OfficialNIHR

This is for the mods and rockers among you who spent the last week at the seaside and missed the twitter announcements…. Great to see this focus on public involvement in social care. ‘Get all sides of the story’: public involvement and participation in adult social care research The NIHR School for Social Care Research […]

It’s a personal thing: You say stratified medicine and I say…

The UK Academy of Medical Sciences (AMS) does not do hyperbole.  This is a good thing considering the histrionics that usually accompanies discussion about stratified medicine. AMS brought out its long-awaited report on stratified medicine on Friday entitled ‘Realising the potential of stratified medicine.’ It’s straight-laced approach to the subject matter means it failed to […]

Generation R: young people improving research event: 11 Sept 2013

Been meaning to post this for a while and not just because the poster design is going to brighten up my blog pages for a while. Our Medicines for Children Research Network (MCRN) really has been an exemplar for involving young people in research.  Find something as good across Europe and I will eat my […]

It’s NIHR Friday – Public involvement: did the research network move for you?

NIHR Clinical Research Network Survey Patient and Carer (Lay) Involvement in Research: Your Experience The National Institute of Health Research (NIHR) Clinical Research Network (CRN) Patient and Public Involvement Steering Group is running a survey to capture how being involved in research impacts on patients and carers. You should take part in this survey if […]