PatientView - the originators of the excellent myhealthapps.net directory - published an important piece of work this week entitled: 'What do patients and carers need from health apps - but are not getting?' You can download it here. Their report looks at the results of a survey they conducted of over 1,000 patients and carers across Europe … Continue reading Blog: I have ‘This Feeling’ – Could 9 out of 10 health apps be simply useless from a patient and carers point of view?
NIHR
We must maintain our national impetus and leadership on involving young people in research – comment on new report from @Nuffbioethics
This morning the Nuffield Council on Bioethics published its report: Children and research: ethical issues calling for a change in research culture to enable young people to shape how research is ‘prioritised, designed and reviewed.’ In what amounts to a ‘call to arms’ the report urges funders, clinicians, researchers and ethicists to work together and, … Continue reading We must maintain our national impetus and leadership on involving young people in research – comment on new report from @Nuffbioethics
Review of public involvement in NIHR published #ppiextramile
Hot off the presses: Almost a year to the day that the Director General Research and Development/Chief Medical Officer commissioned a strategic review of public involvement in the National Institute for Health Research (NIHR), the final report and recommendations have today been published. Simon Denegri, the National Director for Patients and the Public in Research … Continue reading Review of public involvement in NIHR published #ppiextramile
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
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?
The art of lay reviewing in health research: some pointers
A little while ago someone suggested that I write something about my approach to lay reviewing in health research. Not so much a 'how to' guide as there are lots of these and very good they are too. More, an insight into the questions I ask myself when forming an opinion on an application for … Continue reading The art of lay reviewing in health research: some pointers
Why do charities play the numbers game when talking ‘burden of illness’ and medical research?
I notice that there has been a fair bit of news generated today by the charity, Autistica, who have published a study showing that autism costs the UK £32 billion per year in terms of treatment, lost earnings etc. The study was conducted by researchers at the London School of Economics (LSE) and follows one … Continue reading Why do charities play the numbers game when talking ‘burden of illness’ and medical research?
Top NIHR researchers speak out about importance of public involvement in research
This has got a bit lost in the hurly burly of the last few days. It is important that it does not remain so. The National Institute for Health Research (NIHR) Senior Investigators - of which there are around 200 I believe - are the very best of the very best researchers across the organisation. NIHR … Continue reading Top NIHR researchers speak out about importance of public involvement in research
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
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
Patients hack medical research in planned attack
Hacking in this context is what we call 'bringing people with different views and skills together to work on problems.' [Sorry to disappoint the headline chasers but I hope you'll stay with me] And 'hackathons' - events where such hacking activity can take place - are increasingly common across the health arena as a means of solving problems. In … Continue reading Patients hack medical research in planned attack
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
Do I detect a slight fumble of the ball in today’s Commons Select Committee report on clinical trials?
Not for the first time I was awake at 3am this morning. Cup of tea in hand, watching American football. It's amazing how those players keep the ball when so many other players are piling on top of them. Rarely do you see the thing break free. They must practice for hours.... The House of Commons … Continue reading Do I detect a slight fumble of the ball in today’s Commons Select Committee report on clinical trials?
Clinician resistance to research may require an arm around the shoulder not a red card
....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 … Continue reading Clinician resistance to research may require an arm around the shoulder not a red card
It’s NIHR Friday: NHS Trust research activity stats published
You didn't think I'd forget NIHR Friday did you? So the National Institute for Health Research Clinical Research Networks Co-ordinating Centre (NIHR CRN CC), together with The Guardian online, has this week published its annual performance tables for research activity in each NHS Trust in England for 2012/13. You can find the figures for your local … Continue reading It’s NIHR Friday: NHS Trust research activity stats published
NIHR Friday: CLAHRCs Selection Panel announced plus NIHR Journals Library opens
I was just going to tweet this but since it is in a downloadable pdf and not actually on the face of NIHR's website, I thought it would be helpful to post it - the membership of the Collaboration in Leadership for Applied Health Research and Care (CLAHRC) Selection Panel: Professor Huw Davies (Chair) Co-Head of … Continue reading NIHR Friday: CLAHRCs Selection Panel announced plus NIHR Journals Library opens
It’s NIHR Friday inc. new publications, a competition and NIHR CCF makes the Grade with patients
Yes, it truly does seem as though Friday should be dubbed 'NIHR Friday' given the propensity for my erstwhile colleagues to push info out on the aforementioned day. The clutch of interesting announcements this week include: Publication of the NIHR Annual Report for 2011-2012. You know, I'm sorry if this offends some people but I'm … Continue reading It’s NIHR Friday inc. new publications, a competition and NIHR CCF makes the Grade with patients
A bit of a public involvement mash-up including that idea for an NHS Civil Society Assembly
So here's my unsubstantiated personal theory. It is that one of the root causes of the problems besetting today's NHS' is our failure to pay proper heed to the growing crisis in accountability and responsibility that has been a feature of our increasingly complex health system over the last seventy years. From almost the day … Continue reading A bit of a public involvement mash-up including that idea for an NHS Civil Society Assembly
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