The UK's medical research economy is biased towards funding work that is essentially about finding cures. Being an essentially altruistic society we respond accordingly as a population. This summer many of us will do all manner of activities to raise money for a cure. Research is a runner, in every sense! But, of the money … Continue reading Comment: Hawks and doves in medical research
Author: simondenegri
NIHR announces local opportunities for public to shape Research for Patient Benefit
If this reads like an advert then I apologise but that's what it is. But it seems a good advert to pass on from the NIHR Central Commissioning Facility (CCF). The NIHR Research for Patient Benefit (RfPB) Programme needs one public member for each of six Regional Advisory Committees. The committees meet three times a … Continue reading NIHR announces local opportunities for public to shape Research for Patient Benefit
Health Research Authority (HRA) publishes its first annual review
It's no secret that I think the Health Research Authority (HRA) has been doing the right things in the right way since its establishment. Today, a colleague drew my attention to its recently published annual review (see the first of the named publications on its home page). It gives a good account of itself as … Continue reading Health Research Authority (HRA) publishes its first annual review
Diagnostic opportunity for patients and the public
Sharing this on the basis that otherwise it may not get a viewing outside the usual circles.... but it is on the Department of Health website. The Department of Health has today announced £4 million to improve diagnosis for millions of patients with a range of conditions. Put simply, we don't have enough good evidence about the diagnostic tests … Continue reading Diagnostic opportunity for patients and the public
1-HELP-CUREIT
It was so humid when I stepped onto the sidewalk it felt like I was treading water. A threat of storms hung in the air, battleship colour clouds steaming slowly across the horizon. Far from here but menacing nonetheless. An occasional spot of rain found its way on to the floor; a steady hum of a/c … Continue reading 1-HELP-CUREIT
Labs of shame – the organisations wanting patients on the cheap
It makes my blood boil. It really does. And at the moment my blood is forever boiling. The object of my anger - the growing number of organisations who herald their patient credentials but refuse to pay to help make it happen. More specifically those who won't pay people's travel expenses, reimburse them for their … Continue reading Labs of shame – the organisations wanting patients on the cheap
An Open Letter to the 15 Chairs of the AHSNs
Dear Colleagues, I understand that you have just received your letters from the Department of Health confirming your designation as an Academic Health Science Network (AHSNs) subject, no doubt, to a few refinements. Congratulations. Me and my colleagues from across the world of public involvement are looking forward to working with you to get innovations … Continue reading An Open Letter to the 15 Chairs of the AHSNs
Clinical research? It’s a people thing.
I can't do policy or politics today. Sorry. Wherever you are and whatever you are doing for International Clinical Trials Day (ICTD) and NIHR's 'Ok to ask' campaign I hope it is going well. For me, it has been all about the people I have met over the past week. 76 year old Anne, diabetic … Continue reading Clinical research? It’s a people thing.
Research transparency: HRA shows a cool head where others fear to tread
The public might just be on the verge of getting the sort of health research regulator they need and deserve. Yesterday the Health Research Authority (HRA) published its plans for promoting transparency around publication of health research findings. Of particular note from a public and patient perspective is its proposal to: 'set standards and issue … Continue reading Research transparency: HRA shows a cool head where others fear to tread
CCGs, Healthwatch, put research on your agenda for Intl Clinical Trials Day (20 May 2013) #nihroktoask
Good morning. There is one week to go before International Clinical Trials Day on 20 May. NIHR's 'Ok to ask' campaign is off to a flying start with 150 hospitals already signed-up to take part. Remember, you can find out more details on the 'Ok to ask' website. A number of Clinical Commissioning Groups and … Continue reading CCGs, Healthwatch, put research on your agenda for Intl Clinical Trials Day (20 May 2013) #nihroktoask
I just walked under the public engagement ladder and survived
My Friday blogs are often philosophical in nature. And so it is today. So what more conducive environment from which to philosophise than the 1.45 from Leeds to London KX. Plato eat your heart out (that's if the at-seat service is working)! Over the last two days I have been caught in a couple of … Continue reading I just walked under the public engagement ladder and survived
Time for a chat I think! Intl Clinical Trials Day, 20 May: ‘Ok to ask.’
NIHR is heading-up a campaign for International Clinical Trials Day (ICTD) on 20th May entitled 'Ok to ask.' Its aim is to empower more patients to talk to their doctor about research. I happen to be writing this from Bergen in Norway where I am speaking at the Nordic Health Research and Innovation Conference later … Continue reading Time for a chat I think! Intl Clinical Trials Day, 20 May: ‘Ok to ask.’
The UK has a lorra lorra data and this is how it’s handling it in medical research
Last week Dame Fiona Caldicott published her report on information governance in health and social care (Caldicott2). Dame Fiona is characteristically down-to-earth in this Guardian interview about the need to get people used to the idea of sharing data if they are to see further benefits from medical research. You can read the full report here and, … Continue reading The UK has a lorra lorra data and this is how it’s handling it in medical research
Now this is good, very good. The Cystic Fibrosis Trust has a transparent new research strategy
The Cystic Fibrosis (CF) Trust launched its new five-year research strategy in London yesterday. I have to say I am highly impressed. In terms of content and dissemination they seem to have single-handedly shown the rest of the medical research charity sector how to embrace the future as a funder and a patient group. Why is it … Continue reading Now this is good, very good. The Cystic Fibrosis Trust has a transparent new research strategy
Bold ambition for lung cancer research just what the doctor ordered
I was delighted to see this getting considerable airtime on the radio this morning: the launch of the London Lung Cancer Alliance with its aim of recruiting 3000 lung patients into clinical trials per year. Lung cancer is on the rise in the UK and it is a difficult condition for which to raise public awareness and … Continue reading Bold ambition for lung cancer research just what the doctor ordered
Could a non-scientist lead the MRC, Wellcome, or Royal Society in the future?
A little while ago I stumbled across a survey which said that 70% of the leaders of FTSE 100 companies had an accountancy background. In other words they were not necessarily bloodied in, or married to, their organisations core business. It makes perfect sense when you think about it. Their number one priority is to … Continue reading Could a non-scientist lead the MRC, Wellcome, or Royal Society in the future?
The long and cohort of it: missing public engagement opps from birth
Longitudinal studies (in other words, research that follows a population group over a long period of time) would seem to naturally lend themselves to public engagement and the building of strong relationships with the population concerned. The number of these studies being conducted is increasing as is the amount of investment in them, so they … Continue reading The long and cohort of it: missing public engagement opps from birth
Keep track of your medicines with ‘My Medication Passport’ c/o NW London CLAHRC
I seem to be visiting more CLAHRCs (Collaboration for Leadership in Applied Health Research and Care) next week than in all my time as a boy looking for new school shoes. One of the CLAHRCs unfortunate enough to be visited by me is Northwest London. They've just launched a brilliant new tool to help patients … Continue reading Keep track of your medicines with ‘My Medication Passport’ c/o NW London CLAHRC
New Zealand launches clinical trials portal for researchers and the public
The New Zealand Government has launched its own clinical trials portal in the last few hours. You can find it here. This is the speech by the Minister for Health, Tony Ryall. I have not spec'd the portal out but will be interested in the views of those who do have time to check it … Continue reading New Zealand launches clinical trials portal for researchers and the public
Life on Mars: Bowie sings about public involvement in research?
This is for person who I recently met and said doing public involvement in research was like being on Mars: a set of specially commissioned lyrics I have written to the tune of David Bowie's 'Life on Mars.' It's a god-awful research idea To the patient with the lousy deal But the scientist is saying 'Yes' … Continue reading Life on Mars: Bowie sings about public involvement in research?
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