A hasty and unscientific straw poll by me this week suggests that 8 out of 10 CEOs who are also cat owners continue to place responsibility for public involvement with their communications or PR team. In my view it can be the proverbial 'kiss of death' for public involvement if we agree that PPI is … Continue reading My Friday public involvement surgery: why comms depts can be the kiss of death
Author: simondenegri
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 … Continue reading Blog: Local leadership in public involvement in research shows the way
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 … Continue reading Musings on #patientdata and: ‘the moral case for public involvement in research is dead, long live…’
Is UK health research ready for localism?
A glance at the events already confirmed in my diary for 2014 tells you everything you need to know about the priorities this year compared to last. Events hosted by one or more of the Academic Health Science Networks (AHSNs), Collaborations for Leadership in Applied Health Care and Research (CLAHRCs) and new Local Clinical Research … Continue reading Is UK health research ready for localism?
Wherefore app thou? Perspectives on digital and social media in health for 2014
How long before GPs prescribe you and I a mobile phone 'app' for our condition instead of a pill, a test or some other treatment? Sounds farcical doesn't it? Perhaps it is already happening?. As a reviewer it amazes me the number of new ideas for helping patients that come before me in the guise of 'social media' which actually … Continue reading Wherefore app thou? Perspectives on digital and social media in health for 2014
Even pharma must understand the perils of Schwanning about in a storm
On New Year's Eve I took my family up 'The Shard,' London's newest and tallest landmark. As we looked Eastwards a squall was readying itself over the North Downs; the latest in a succession of storms to batter our shores over the past few weeks. Low-flying clouds threatened to swallow us whole. The wind roared around … Continue reading Even pharma must understand the perils of Schwanning about in a storm
Santa climbs the ladder of engagement
"Santa showed why he is a patient leader by climbing the ladder of engagement for another year running, undaunted by the latest Health and Safety statistics on accidents at work." Happy Holidays and thanks for reading my blog in 2013. I hope you have found it both enjoyable and interesting. Here's to reaching the top of the ladder … Continue reading Santa climbs the ladder of engagement
UK Clinical Trials Gateway (UKCTG) now shows open trials by location in early Xmas stocking filler for patients
I once wrote an article for a local rag bemoaning the state of the town's railway station. When, two days later, the council announced plans for its complete redevelopment I expressed my shame and guilt to a friend for not having known this. "Simon," he said after a long pause, "it sounds like a simple case … Continue reading UK Clinical Trials Gateway (UKCTG) now shows open trials by location in early Xmas stocking filler for patients
List of Academic Health Science Networks (AHSN), their Chairs, MDs, websites, Twitter feeds, priorities
Goodness knows what made me start to do this. Perhaps it's the 'public servant' in me. Hey ho! Here's a list of the Academic Health Science Networks (AHSNs), websites (click on the relevant AHSN name), their MDs, Chairs, and Twitter addresses. An interactive map of the AHSNs areas can be found on the Yorkshire and … Continue reading List of Academic Health Science Networks (AHSN), their Chairs, MDs, websites, Twitter feeds, priorities
The Medical Research Council (MRC) is ‘a good egg’ and that’s the issue
Science historian and Guardian science blogger, Vanessa Heggie (@HPS_Vanessa) has written a fascinating piece about how AIDS activists among others changed the way we run clinical trials and persuaded researchers to adopt new methods. That's certainly the history lesson passed down to me as Chair of INVOLVE by previous members. They will tell you that, before we ever talked … Continue reading The Medical Research Council (MRC) is ‘a good egg’ and that’s the issue
Health Research Authority looks for good practice in identifying research participants – survey.
Excuse my laziness but it is Saturday. Here's a copy of a press release put out by the a Health Research Authority (HRA) on Wednesday about a call (in essence, a survey) they are doing for good practice in identifying potential participants for research studies. The results of the work will be published by HRA … Continue reading Health Research Authority looks for good practice in identifying research participants – survey.
INVOLVE cleans-up on standards for public involvement in research
The debate about standards for public involvement in research is an important one. As a community we are growing in number by the day. So is the range of activities that we are involved in. And the number of organisations we are part of. The resulting variety is rich and exciting. There are those of us who … Continue reading INVOLVE cleans-up on standards for public involvement in research
Who’s up and who’s down in health and research this week?
1. 'The dog ate my whole doctor's surgery.' Yep, it's those dastardly GPs again. Ever since the weekend news that many cancers are first diagnosed in A&E we've seen the excuses just roll off their collective tongues. So much so you'd think they'd said them before. We're underfunded, underpaid. stunned by so much change, and … Continue reading Who’s up and who’s down in health and research this week?
A nod to Nelson Mandela on the eve of the G8 Dementia Summit (agenda published)
It is no surprise that, in death as in life, Nelson Mandela has caused us to gaze upon humanity with warmth and optimism. I am sure I am not alone in having taken a great deal of pleasure from reading the celebrations of his life and reflecting on how different tomorrow would look were it not … Continue reading A nod to Nelson Mandela on the eve of the G8 Dementia Summit (agenda published)
Time’s up for the Charity Commission as we know it. But I’m just a donor so what do I know.
Amidst the balderdash, bureaucracy and blocking that passes for government these days, the Public Accounts Committee (PAC) and its Chair, Margaret Hodge MP, have become something of the nation's conscience. This week Margaret Hodge is reported by Third Sector magazine as suggesting the Charity Commission could be scrapped. At the very least she has said … Continue reading Time’s up for the Charity Commission as we know it. But I’m just a donor so what do I know.
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….
Comment: Is the G8 Dementia Summit about scaling new heights or making base camp?
This time next week they will be laying the tables and giving the carpet at Lancaster House in London one last hoover. All in preparation for the G8 Dementia Summit on 10/11th December 2013. I expect the current stream of articles and stories about dementia will become a veritable flood ahead of the big day. … Continue reading Comment: Is the G8 Dementia Summit about scaling new heights or making base camp?
Big month in Brussels for clinical trials…but let’s not be hasty
It's going to be a 'big-ish' month in the EU for clinical trials. By most accounts, EU legislators will reach a compromise agreement on the proposed new Clinical Trials Regulation in time for Christmas. The key focus for industry bodies is around making sure the legislation embraces aggressive timelines for the approval of clinical trials. Remind me, isn't … Continue reading Big month in Brussels for clinical trials…but let’s not be hasty
Drug safety regulation need not be a jagged edge on which patients catch themselves
Off to Liverpool today. I am chairing a session at the Pancreas Society's first ever PPI forum. This is the opener to their annual scientific meeting which takes place the rest of the week. Last Friday was another first. I spoke to, and took part in, the inaugural meeting of the MHRA's ( Medicines and … Continue reading Drug safety regulation need not be a jagged edge on which patients catch themselves
Jan 2014 Lancet and DH symposium: ‘increasing value, reducing waste’ in research
Lancet Symposium on research: ‘increasing value, reducing waste’ This has to be one of the most important issues for the public and health research. The debate on 'increasing value, reducing waste,' was kicked-off if not brought into sharp relief by a 2009 paper by Chalmers and Glasziou published in the Lancet which estimated that 85% … Continue reading Jan 2014 Lancet and DH symposium: ‘increasing value, reducing waste’ in research
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