I'm always very chuffed when people ask for a copy of my presentations after a talk. Usually I am quite good at emailing them to people or asking the organisers to send them round. Anyway, I have done a lot of meetings lately and thought I would post here copies of my slides from the … Continue reading @SDenegri presentations about the public and health research from Leicester, HSRN and Leeds
public involvement
It’s NIHR Friday – Public involvement: did the research network move for you?
NIHR Clinical Research Network Survey Patient and Carer (Lay) Involvement in Research: Your Experience The National Institute of Health Research (NIHR) Clinical Research Network (CRN) Patient and Public Involvement Steering Group is running a survey to capture how being involved in research impacts on patients and carers. You should take part in this survey if … Continue reading It’s NIHR Friday – Public involvement: did the research network move for you?
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
New stuff!..Dementia ‘infokit’, ‘Building Research Partnerships,’ CLAHRC Q&As, AHSNs and ABPI
Top initiatives today..... Care to learn to care better. The NIHR Dementia & Neurodegenerative Diseases Research Network (DeNDRoN) today launched their new 'Patients in Research' infokit. It's an excellent free resource showcasing work from across health and social care, stories, ideas, tips and tools. This great piece of kit is all part of a larger effort … Continue reading New stuff!..Dementia ‘infokit’, ‘Building Research Partnerships,’ CLAHRC Q&As, AHSNs and ABPI
The seven mistakes that organisations make on public involvement
I could easily have chosen more than seven. But I was thinking along the lines of the 'seven wonders.' Please do free to comment with an eight, ninth etc... Anyway, here are what I think are the seven most common mistakes organisations make on public involvement. 1. 'A lack of heart and soul:' Not embracing … Continue reading The seven mistakes that organisations make on public involvement
‘Best left alone’ is not the motto we want for our health regulators
It being half-term you can never have enough travel games on hand. Current favourites for me are: a) guessing who will be the new Director of the Wellcome Trust and; b) thinking of a name for the body created if you merged all the current Research Councils into one. I did apply for the former … Continue reading ‘Best left alone’ is not the motto we want for our health regulators
Reminders that this patient experience malarkey is a serious business
I don't know about you but I'm nervously awaiting the results of my 'family and friends test' from Christmas and the New Year. I was feeling ok about it. Then a friend of mine suggested a good result may not be a 'good result' at all: it might actually be a perverse and calculated attempt by my nearest and … Continue reading Reminders that this patient experience malarkey is a serious business
Diabetes and cancer network reports on engaging people about clinical research and more…
My thanks to the Diabetes Research Network (DRN) for sending me their report 'Improving public awareness of clinical research.' Clinical research networks are at the 'front-line' in terms of encouraging people to take part in research and this report gives a good insight into some of the tools and strategies used by DRN. Others trying to … Continue reading Diabetes and cancer network reports on engaging people about clinical research and more…
Patients, David and Sally, talk about their part in the Parkinson’s Monument Discovery Project
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
NHS leaders on public involvement in services and research
Just thought I would pass on these two pieces by Candy Morris, Research Champion for the NHS, and Mike Farrar, CEO of the NHS Confederation, respectively, about the importance of public involvement in the NHS. Candy's article appears in the Department of Health's regular bulletin 'The Month,' and focuses on public involvement in clinical research. … Continue reading NHS leaders on public involvement in services and research
New book on social care, service users and user involvement
There is just enough time before my Sunday tea and 'Downton' to give a merciless and unabashed plug for a new book by my good colleagues, Peter Beresford and Sarah Carr, entitled 'Social Care, Service Users and User Involvement' published by Jessica Kingsley and available also through Amazon. It really is a fine collection of … Continue reading New book on social care, service users and user involvement
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?
The NHS Commissioning Board Draft Mandate and patients in health research
The Shard went up (officially). And the NHS Commissioning Board Draft Mandate came down from on high. All on the same day. Add the odd torrential downpour with its associated misery and these could be Biblical times. I have come to the conclusion that it is my fate to be locked away somewhere remote and with an intermittent … Continue reading The NHS Commissioning Board Draft Mandate and patients in health research
Double whammy by INVOLVE: new resources on diversity and inclusion in public involvement, and impact on research conduct
INVOLVE has published two fabulous resources on some current hot topics in public involvement in research: Strategies for diversity and inclusion in public involvement – this is a supplement to our briefing notes for researchers Public involvement in research:impact on ethical aspects of research – this resource provides examples of the impact of public involvement in the … Continue reading Double whammy by INVOLVE: new resources on diversity and inclusion in public involvement, and impact on research conduct
The life sciences, the public and the growth agenda…its not just about bums on seats
This is an extract from a talk I gave on Monday to the Faculty of Medical Sciences at the University of Newcastle. I tried to answer the following question: The life sciences are seen as fundamental to the nation’s health and to economic growth. But what is the public’s role in making this happen? The … Continue reading The life sciences, the public and the growth agenda…its not just about bums on seats
Oldham CCG’s Fairness Commission – one approach to public involvement in the new NHS
I hadn't seen this before...no doubt I am one of the last, as usual. It is an article by Dr Ian Wilkinson, the accountable officer for Oldham Clinical Commissioning Group (CCG), which appeared in Pulse magazine. He describes their approach to public involvement with particular reference to the establishment of a 'Fairness Commission.' The Commission's report can … Continue reading Oldham CCG’s Fairness Commission – one approach to public involvement in the new NHS
HSJ ‘Progressive Research Culture’ Award 2012: Open for entries
It's that time of year again to get your local NHS Trust to enter this year's Health Service Journal (HSJ) 'Progressive Research Culture' Award. This follows the success of last year's award which saw over 40 Trusts enter. Further details from the NIHR CRN CC website. I'm delighted that the nine criteria include these two: - Evidence of … Continue reading HSJ ‘Progressive Research Culture’ Award 2012: Open for entries
In 2013 we want every hospital to be doing this on International Clinical Trials Day…
This from the Dorset Echo about Dorset County Hospital's very simple approach to promoting the importance of taking part in clinical trials on International Clinical Trials Day yesterday. Happy to post other examples if people have any.
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
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