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
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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
Moorfields research team reports on benefits of public involvement to eye patients and staff
Sometimes it is the lot of the blogger to feel like the producer of 'Have I Got News For You.' One's research can taken you to all sorts of places you didn't know existed. Then again it can also turn up some gems. This morning I blogged about the WHO report on medicine priorities and … Continue reading Moorfields research team reports on benefits of public involvement to eye patients and staff
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?
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
INVOLVE steps forward to change behaviours on plain English summaries of health research
I make no apology for being a little bit obsessed by plain English summaries of research this week. Events have conspired to make it this way. So, what did NIHR do when faced late last year with rising concern among academics, researchers, patients and the public about the poor quality of lay summaries? It commissioned … Continue reading INVOLVE steps forward to change behaviours on plain English summaries of health research
Writing competition open for entries – win an iPad and article in eLife #A2UComp
And if you already have one you can always re-gift it (to me)! This is a new science writing competition for researchers and I shall be one of the judges I am delighted to say. The 'Access to Understanding' writing competition for bioscience researchers has been launched by Europe PubMed Central and The British Library … Continue reading Writing competition open for entries – win an iPad and article in eLife #A2UComp
Healthtalkonline looking for people to talk about their experiences of patient and public involvement
Healthtalkonline is looking for volunteers to be interviewed about their experiences of patient public involvement in research design and delivery. Flyer with contact details below.
Royal College looks to boost child health research with children’s charter
I am prone to beating up our Royal Colleges for one reason or another. But, over the last few years, I have grown to admire and respect the work of one of their number in particular - the Royal College of Paediatrics and Child Health (RCPCH). Yesterday, RCPCH launched a new report entitled 'Turning the Tide: … Continue reading Royal College looks to boost child health research with children’s charter
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…
Health Research Authority gets to work on speeding-up research
So there I was yesterday afternoon, with my biology 'o'level a distant memory to put it mildly, speaking at the annual NIHR Senior Investigators Meeting thinking: 'how did I ever get into this?' The event brings together the very best of NIHR's researchers for an update on what's happening across health research. And this was mentioned … Continue reading Health Research Authority gets to work on speeding-up research
Cancer Research UK to get a new look
I noticed this in Civil Society from a few hours ago. Cancer Research UK (CRUK) - the largest publicly funded medical research charity in the UK - is reported to be launching a new identity in September to coincide with the 10th anniversary of its establishment from the merger of Cancer Research Campaign and the … Continue reading Cancer Research UK to get a new look
My key points to the ‘Caldicott 2’ Review of Information Governance earlier today
Actually that's not quite true because, as is not uncommon with these things, the evidence session I attended today was more of a discussion, and a very good one it was too. But I did more or less cover the following points. At the end we were asked to express one wish about what happens … Continue reading My key points to the ‘Caldicott 2’ Review of Information Governance earlier today
PLoS ONE study – I’d go further: poor quality information undermines rights of clinical trial participants
On my recent visit to Newcastle, my afternoon was spent talking to, and answering questions from, the public about research. Clinical trials featured heavily. The most common theme was their frustration over the poor quality information given to trial participants before, during and after a trial had finished. The journal, PloS ONE, has today published a … Continue reading PLoS ONE study – I’d go further: poor quality information undermines rights of clinical trial participants
‘Caldicott 2’ Evidence gathering session on research – ‘patients and the public’ questions
'Caldicott 2' is the health and social care information governance review being conducted by Dame Fiona Caldicott with a due date for completion this autumn. The title of the review is 'Information: to share or not to share?' I passed by the official website today and noticed that it now has a huge amount of information … Continue reading ‘Caldicott 2’ Evidence gathering session on research – ‘patients and the public’ questions
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
INVOLVE Strategy 2012-2015 published
INVOLVE - the national advisory group for the promotion and advancement of public involvement in research - has published its strategy for 2012-2015. See the INVOLVE website for more details. Work on the strategy began last summer - just as I became INVOLVE's Chair - and I am very excited about setting to work to deliver this … Continue reading INVOLVE Strategy 2012-2015 published
A few more ‘£s’ and I’ll be opening my own Wellcome Collection…just keep those surveys coming
If only petrol was as plentiful a resource as public attitudes. There is no end to the extent to which we can mine what the public thinks about this, or that. Occasionally a survey will hit a rich seam of information and insight. Then again, so numerous are those who are drilling into the public mindset nowadays, that I … Continue reading A few more ‘£s’ and I’ll be opening my own Wellcome Collection…just keep those surveys coming
Have charities really put the brakes on public involvement in research?
I was pulled-over by the police on the M25 on Sunday night. Unbeknown to me, my car brake lights had failed so that they were permanently on. Quite apart from blinding any traffic on my tail, an unwitting driver could easily have mis-read my intentions with who knows what consequences. Thankfully that didn't happen. And by … Continue reading Have charities really put the brakes on public involvement in research?
Care Homes Research: New toolkit produced to ENRICH lives
Given the concerns over the quality of care home provision in the UK, it is essential that we invest in research that will improve care-giving in these settings for the future. The Dementia and Neurodegenerative Diseases Research Network (DeNDRoN) have just launched a new toolkit (website) entitled 'Enabling Research in Care Homes (ENRICH)' to help promote and … Continue reading Care Homes Research: New toolkit produced to ENRICH lives
Simon Denegri's Lay Review 