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
Author: simondenegri
Health and social media: ‘APPY’ days are here again….
PatientView has followed up last year's excellent debut directory of health apps across the EU with a new website. myhealthapps.net aims to provide the same information as the directory but in a smart online version: http://myhealthapps.net/search/results/health-research/name/z-a/all/all I have done a little bit of road-testing (on my mobile phone no less) and it's pretty impressive what … Continue reading Health and social media: ‘APPY’ days are here again….
Pens and PCs to the ready: 2014 Access to Understanding science writing competition is launched
One of my highlights of last year was judging the 'Access to Understanding' science writing competition. And I didn't event win it! Well, the good news is that it's happening again and the 2014 competition was launched this morning. The less good news perhaps - from the point of view of entrants anyway - is … Continue reading Pens and PCs to the ready: 2014 Access to Understanding science writing competition is launched
Swipe here to donate…Tissue donation for research: what’s your view? Blog and survey.
The aforementioned survey is after the blog post if you can't stand the thought of reading this intro..... I somehow think that 'data' will be a significant feature of my life over the next few weeks. Next week I am a panellist at the NIHR/ABPI conference '360 of Health Data: Harnessing Big Data for Better … Continue reading Swipe here to donate…Tissue donation for research: what’s your view? Blog and survey.
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
The competition/chugging/hunt/fight [delete as inappropriate] for your DNA has only just begun…..
The BBC is this morning running a story on its online health pages about the launch of the UK Personal Genome Project - a UK subsidiary of a US initiative - and its 'hunt' for 100,000 volunteers to share their DNA to help fight disease. Like others, I am not sure I feel totally comfortable about … Continue reading The competition/chugging/hunt/fight [delete as inappropriate] for your DNA has only just begun…..
Avoiding Laurel and Hardy when it comes to science can be difficult for the public
An early start today finds me waiting for a flight to Belfast where I am speaking at the 9th Scientific Conference of the Northern Ireland Chest Heart and Stroke (NICHS) charity. Just time enough to pen a quick blog then. Lucky me. Poor you. Last night I was looking at my papers for a meeting … Continue reading Avoiding Laurel and Hardy when it comes to science can be difficult for the public
@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 … Continue reading @RBandH Guest blog: Promoting Clinical Research Locally – From ‘OK to Ask’ to Research Changed my Life
An invitation from the Health Research Authority (HRA): #patientsasregulatorypartners
Invitation to contribute to workshops about the Health Research Authority’s Public Involvement Strategy The Health Research Authority is running two workshops to give people interested in our strategy an opportunity to discuss it and how we put it into action. We would like these to include researchers and research funders as well as patients and … Continue reading An invitation from the Health Research Authority (HRA): #patientsasregulatorypartners
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 … Continue reading CMO as good as her word on young people’s involvement in research
The ragged trousered patient?
'Why does it have to be so complicated? It is so frustrating. I just wanted to do something useful,' My Canadian friend's irritation with the increasingly impenetrable language that we are creating around 'public involvement' was palpable. It was not the first plea for common sense to prevail I heard last week. It will certainly … Continue reading The ragged trousered patient?
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 … Continue reading Exclusive preview! UK clinical research gets its own TV show…..Downtown eat your heart out @NIHRCRN
Building ‘research active’ communities for a healthier population: a clear mission for CLAHRCs, AHSNs, LCRNs
I am in Alberta, Canada. I have been invited over to share the UK's experiences in developing public involvement in research. As ever, it is the similarities and not the differences between our two experiences that strike you on a visit like this. More about those another time. My good friend, Derek Stewart, yesterday wrote an excellent blog with his … Continue reading Building ‘research active’ communities for a healthier population: a clear mission for CLAHRCs, AHSNs, LCRNs
Is Healthwatch England, Barking up the wrong tree?
Call me simple-minded but it never bodes well for an organisation in my view, if WORD persists in underlining your name in red. I should know. Nor does it bode well if your strategy doesn't fit on one side of A4. If people can't print it out they won't read it. In my opinion. But … Continue reading Is Healthwatch England, Barking up the wrong tree?
New HRA web guidance on consent and participant info sheets open for review
Yep, it is a double whammy from the Health Research Authority (HRA) via me. Earlier I blogged about the HRA's new public involvement strategy. Now I am passing on the following which is self explanatory I think...and I am sure they would welcome your input if you have time. One of the good things about the revised … Continue reading New HRA web guidance on consent and participant info sheets open for review
Health Research Authority makes its pitch to patients and the public
Now, how does the famous saying go? Some are born regulators, some become regulators, and some have regulation thrust upon them. Yesterday our medical research regulator - the Health Research Authority (HRA) - set out its strategy for public involvement: http://www.hra.nhs.uk/patients-and-the-public-2/how-the-hra-works-with-patients-and-the-public/our-strategy-for-public-involvement/ Regulators are the modern tool by which Governments operationalise law. Years ago it used … Continue reading Health Research Authority makes its pitch to patients and the public
Time to get personal over The Sun’s repeat offending on mental health
Sometimes in life you look back and wish you had stuck to your guns and withstood the utter humiliation you felt at the time. I had one of those moments last night when reading The Sun's despicable and misleading headline about mental health. It reminded me of an encounter I had ten years ago almost to the day. This was … Continue reading Time to get personal over The Sun’s repeat offending on mental health
Parkinson’s UK asks those affected by the disease to identify the top 10 unanswered research questions
Parkinson's UK is an excellent organisation. It is arguably an exemplar for other charities looking to involve patients and the public in medical research. This week, together with the indefatigable James Lind Alliance, it set about the task of asking people affected by Parkinson's - those with the disease, carers, family members, health and social care professionals etc., - … Continue reading Parkinson’s UK asks those affected by the disease to identify the top 10 unanswered research questions
‘Send’ (a poem about personal data) for #NationalPoetryDay
It is National Poetry Day today, October 3rd. Which means I get to inflict more of my poetry on you. Sorry. Send You can download me, You can put a USB stick Where it hurts And empty my bad memories. You can link it, crunch it. Anonymise, Analyse, Get the hell out of IT. Big … Continue reading ‘Send’ (a poem about personal data) for #NationalPoetryDay
Notes from a ‘small island’ in health research…..otherwise known as INVOLVE
A small island has appeared off the coast of Pakistan following the tragic earthquake there last week. The consensus of scientific opinion is that, before long, this island will disappear without trace. In the meantime it is an interesting curiosity, attracting quite a gaggle of geologists and geographers. I wonder if that is how INVOLVE was … Continue reading Notes from a ‘small island’ in health research…..otherwise known as INVOLVE
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