At the UK Dementia Research event last week, I got chatting to Professor Richard Wade-Martins who is Principal Investigator at The Oxford Parkinson's Disease Centre. This was in the queue for the cloakroom I should add, and following my witterings during the afternoon panel session. Richard leads a five year programe of research in Parkinson's disease at … Continue reading Patients, David and Sally, talk about their part in the Parkinson’s Monument Discovery Project
public involvement in research
If NZ can do this why can’t we?
I get the feeling that this might not go down well. But I noticed this on the 'wires' this evening and you really have to say: 'why not?' The New Zealand Government is launching a $1million advertising campaign next month in which the public will be asked to help identify the scientific challenges which should … Continue reading If NZ can do this why can’t we?
Is it an industry or a movement we are creating?
In his Guardian blog yesterday, Dick Vinegar, asks a genuinely good question: 'Who is fighting the patient's corner?' He writes about his recent attendance at a Westminster Health Forum conference about Healthwatch, and voices concern that all we are doing is creating just another bureaucracy in the name of patients. A thick, muddy, layer of … Continue reading Is it an industry or a movement we are creating?
Clinical trials activity report for England highlights progress but much work still to be done
The National Institute for Health Research (NIHR) CRN CC has today published its clinical research activity report for the final quarter of 2011/12. Some of the data and a good summary of what they mean is also available on The Guardian website. Last year was the first that this sort of information was made widely available. So … Continue reading Clinical trials activity report for England highlights progress but much work still to be done
Details of The Guardian live Q&A on public engagement in research now available
The Guardian has just put up on its website details of the live Q&A about public engagement in research that it is holding at lunchtime on Thursday 24th May (that's this week). Good line-up for the panel and rather excited about it. The link above also includes details of how to follow the discussion live … Continue reading Details of The Guardian live Q&A on public engagement in research now available
Thoughts on public involvement, participation and engagement in research…from Denmark
Those of you who follow me on twitter (and you can do so by clicking on the twitter symbol on the blog), will know that, earlier this week, I was tweeting from Copenhagen in Denmark. Myself and Derek Stewart, Associate Director for PPI at NIHR CRN CC, were there to help launch the Danish Health … Continue reading Thoughts on public involvement, participation and engagement in research…from Denmark
We need more than better chat-up lines to increase participation in research
'Pedestrian freight.' It is a term I had not come across until last week. I believe it is the phrase once used inside train companies to describe you and I, the commuters who throng with fortitude through our stations up and down the land every day. Perhaps it still is, I don't know. Such 'internal' phrases can … Continue reading We need more than better chat-up lines to increase participation in research
Friday drivetime blog: regional accents in public and patient involvement
It is still very early days in my new role as the NIHR Director of Public Participation and Engagement but I have already received a number of invitations to visit and see some of the great initiatives happening up and down the country. Keep them coming. It is my intent to get 'out there' as … Continue reading Friday drivetime blog: regional accents in public and patient involvement
The ALOIS Community: carers and the public decoding Alzheimer’s disease
On Tuesday I tweeted from the invoNET workshop I was Chairing, about some of the fabulous studies of public involvement in research being showcased during the day. I highly recommend you visit the website invoNET to discover more about - and join - the burgeoning evidence and community in this field. As is typical on such days, … Continue reading The ALOIS Community: carers and the public decoding Alzheimer’s disease
Entitled to a title? Should we better recognise members of the public and patients involved in research?
Various reports today about the Secretary of State for Health, Andrew Lansley MP's, statement in response to a question today in the Commons that he is working to introduce an 'effective compliance regime' to ensure local NHS organisations implement NICE recommendations. Those with children will no doubt empathise. I'm not sure that as a statement … Continue reading Entitled to a title? Should we better recognise members of the public and patients involved in research?
Research is for life: making research part and parcel of the patient journey
I was very privileged to be asked to give the Furlong Christmas Lecture a few weeks ago. I hope this doesn't seem egotistical but here's the text of that lecture amended with useful links etc - it touches on and rehearses themes that will be familiar to those of you who have visited the blog … Continue reading Research is for life: making research part and parcel of the patient journey
Supertrams, supertramp and day-glo…plus JLA (no, not JLS!) go to number one
I don't know about you but I've taken to asking for a 'double-dip' lottery ticket since yesterday's Autumn Statement. Never has so much hinged on four new trams in Sheffield, who would have thought? But as soft rock band Supertramp famously said in "Put On Your Old Brown Shoes": ''We've got to get away, get … Continue reading Supertrams, supertramp and day-glo…plus JLA (no, not JLS!) go to number one
INVOLVE membership drive – help shape the future of public involvement in UK research
Passion more than duty prevails upon me to post details of INVOLVE's search for new members. As you may know I have recently taken over as Chair of INVOLVE. Just follow the links below . Copy as follows....... Would you like to get involved with INVOLVE? We are looking for new members. INVOLVE has a … Continue reading INVOLVE membership drive – help shape the future of public involvement in UK research
simondenegri.com 