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?
Author: simondenegri
Pharmadrama – it’s not what you do it’s the way that you do it @EFPIA @PMLiVEcom
This is a brief one. EFPIA - the European Federation for Pharmaceutical Industries and Associations - has this morning launched a manifesto for putting pharma at the heart of evonomic growth in the European Union (EU). http://www.efpia.eu/uploads/documents/EFPIA-health&growth_MANIFESTO_V11_pbp.pdf It's a comprehensive tome. With laudable recommendations and objectives on many things I would agree with it on … Continue reading Pharmadrama – it’s not what you do it’s the way that you do it @EFPIA @PMLiVEcom
NIHR and NAPP announce new award for research engagement in primary care
This morning I was the guest of the National Association for Patient Participation (NAPP) whose annual conference entitled 'Quality in Primary Care' is taking place in Leeds today. It marks the end of their annual awareness week. NAPP's members are made up of several thousand Patient Participation Groups (PPGs) in GP practices up and down … Continue reading NIHR and NAPP announce new award for research engagement in primary care
Some research and public involvement haikus
'cause it's Friday. As Morrissey said: 'some haikus are better than others.' Haiku I Knowing my illness Puts researchers to the test - benefits us all Haiku II When sharing data It's polite to ask me first - Consenting adult Haiku III I ask the questions You work out all the answers - I say … Continue reading Some research and public involvement haikus
Simon Stevens puts innovation and patients as innovators front-of-house in NHS
Simon Stevens, the relatively new NHS Chief Executive, put innovation front-of-house in his speech to the NHS Confederation yesterday. He identified it as one of three elements crucial to 'future-proofing' the NHS for the challenges ahead. You can read the full speech here. But I have also included the relevant extract below as it is worth reading. A few points … Continue reading Simon Stevens puts innovation and patients as innovators front-of-house in NHS
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
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
Are you a speaker who eats, speaks and leaves? Then listen up.
I am. Or rather I was. But I am trying to change. Once upon a time it was only Government Ministers who turned up five minutes before their piece, said what they had to say, then left. It's not uncommon for them to depart the podium without even answering questions. And then there are those … Continue reading Are you a speaker who eats, speaks and leaves? Then listen up.
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
The greatest lie in the land of localism in health care and it’s all about power
This afternoon I have had cause to work with patients, carers and professionals from the world of health and social care service provision. A somewhat different world for me but, as ever, I learnt so much. One participant described their recent experience as a patient as like 'being captured like a spy,' technically proficient and efficient, … Continue reading The greatest lie in the land of localism in health care and it’s all about power
A pox on www! Has the humble website become the public engagement tool of choice for the lazy scientist?
Or should that be a pixel! If you want a brief but mind-boggling, diversion from the tedium of your day then look no further than 'internet live stats' which shows the number of website, blogs, tweets and other social media stuff being created every second of every day. Into this miasma do our scientists, research … Continue reading A pox on www! Has the humble website become the public engagement tool of choice for the lazy scientist?
Pharma is just not wired to act in the public interest when the chips are down
It has been an interesting 24 hours for some of our goliaths of research funding. Starting with the positive, Cancer Research UK (CRUK) rolled out its new research strategy this morning: 'Beating Cancer Sooner.' Its bold new vision is to see 75% of people surviving the disease in the next twenty years. That's compared to the 50% … Continue reading Pharma is just not wired to act in the public interest when the chips are down
Do we really need the Medical Innovation ‘Saatchi’ Bill? I’m unconvinced.
If I were a Member of Parliament (MP) voting today on the Medical Innovation Bill - otherwise known as the Saatchi Bill - then, at best, I would be abstaining. That sounds like a cop-out but please read on. The Bill is named after its sponsor in Parliament, Lord Maurice Saatchi whose wife died of ovarian … Continue reading Do we really need the Medical Innovation ‘Saatchi’ Bill? I’m unconvinced.
Thoughts on some of the latest health research stories in the media
I hope you have had a good Easter weekend. There have been three health research stories in the last week that have caught my attention. Each story is significant in its own right. But they also share a common theme around the importance of public participation in research. First up is the research published by King's College … Continue reading Thoughts on some of the latest health research stories in the media
The medical marathon; a piece to mark the #LondonMarathon2014
What is, I wonder, the equivalent of Noel Coward's lyric 'only mad dogs and Englishmen go out in the midday sun,' which might encapsulate the phenomenon that is the Virgin Money London Marathon? This morning tens of thousands of runners will set out from Greenwich Park as they do every year with high hopes of finishing two, three, four … Continue reading The medical marathon; a piece to mark the #LondonMarathon2014
How to lead an evidence-based lifestyle? For free. Plus goody bag!! @CASPUK
Cochrane UK and the Critical Appraisal Skills Programme (CASP) are running a series of free 'understanding research’ workshops for the public. Actually they are about how to use research and evidence in personal and professional decision-making. Now, if only this course had been run twenty years ago......... Anyway, the first one is in Oxford on 14th … Continue reading How to lead an evidence-based lifestyle? For free. Plus goody bag!! @CASPUK
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
NIHR announces strategic review of public involvement in research #PPIBreakingboundaries
The following official announcement has just been posted on the NIHR website with links to the terms of reference and initial submission document. I say 'initial' because there will be others ways in which you can contribute to the review over the next few months. I am very excited that NIHR has commissioned this exercise … Continue reading NIHR announces strategic review of public involvement in research #PPIBreakingboundaries
‘Hungry’ at the Edinburgh Science Festival? Y-Touring have got just the thing for you.
The Edinburgh Science Festival is fast approaching (5th - 20th April in fact). It is some time since I have been but well worth it every time I have gone (whether as speaker or visitor). A perfect way to spend some of your Easter holiday in fact. So let me plug - mercilessly and without … Continue reading ‘Hungry’ at the Edinburgh Science Festival? Y-Touring have got just the thing for you.
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