Thought for the day: a schoolfriend’s untimely death highlights the importance of choice to our dying day

A dear schoolfriend of mine, Sara, will be laid to rest today. We found each other on Facebook three years ago after a 30 year hiatus. I enjoyed our mutual 'likes' of one another's quirky musings, the various photographs of holidays and birthdays, and the occasional sharing of news about our respective families.  I had... Continue Reading →

Public involvement will be crucial to new NIHR ARCs and the research implementation agenda #CLAHRCs #ARCs @OfficialNIHR @NIHRINVOLVE @ClahrcP

It doesn't matter where you are in the world patients and carers have the same questions about research. This week I am in Sydney, Australia, at the invitation of the Australia Dementia Forum hosted by the National Institute for Dementia Research.  It has been a fascinating two days. Most of all I have enjoyed meeting... Continue Reading →

New @HRA_Latest @OfficialNIHR data on UK public attitudes to health research highlights need to work with under-represented groups to break down barriers #diversity

White, middle-class and well-connected - and that's just the patients: is this the health research culture we wish to see in the UK? Ever since it was established in 2011, the Health Research Authority (HRA) - the UK regulator of health research whose mission is 'to protect and promote the public interest' - has commissioned... Continue Reading →

Newsflash: Could you be a standard bearer for public involvement? Expressions of interest invited. #ppistandards @OfficialNIHR @ResearchWales @publichealthni @CSO_Scotland

The National Institute for Health Research (NIHR) together with its equivalents across the other UK nations - the Chief Scientist's Office in Scotland, Health and Care Research Wales, and Public Health Agency Northern Ireland - has been leading the development of UK national standards to improve the quality and consistency of public involvement. The UK--wide... Continue Reading →

Stop Press: Wake up and smell the coffee – consultation launched on UK-wide draft standards for public involvement in research @OfficialNIHR @ResearchWales @publichealthni CSOScotland @NIHRINVOLVE

How many of you have arrived at a meeting, gasping for a cup of tea, and been presented with a scene not unlike the one in the photo below? An array of coffee pots.  All looking the same. But each holding something different. Coffee, decaffeinated coffee, hot water, tea (possibly). That's before we even get... Continue Reading →

Lancet study puts NIHR top of the intl league table for health research in the public interest inc. public involvement @TheLancet

Yesterday the Lancet published a study by Mona Nasser, Mike Clarke, Iain Chalmers and others looking at how well eleven international research founders are doing to reduce waste in research. This follows a series of articles by Chalmers et al over the last couple of years on the same issue. The study scored funders using... Continue Reading →

Flying the ‘standards’ for public involvement in health research: new initiative launched. Sign up here. @OfficialNIHR @NIHRINVOLVE @ResearchWales #ppistandards

The National Institute for Health Research (NIHR) together with its Welsh equivalent, Health and Care Research Wales, have joined forces to launch a project to develop standards for public involvement in research. The Public Involvement Standards Development Partnership has a website which went live today  where you can learn more and sign up to be... Continue Reading →

NIHR launches new poster campaign on public involvement in research #twosides @OfficialNIHR @NIHRINVOLVE

The UK National Institute for Health Research (NIHR) has launched a striking new poster campaign entitled #twosides to raise awareness of the importance of patients and the public to making health and social care research happen. There are three posters to choose from in the series and you can download or order posters here. These... Continue Reading →

Let’s follow #DryJanuary with a concerted effort to research patient priorities in alcohol-related liver disease @LindAlliance

This blog by me was first published on the National Institute for Health Research (NIHR) prior to Christmas to coincide with the publication of the James Lind Alliance Priority Setting Partnership on alcohol-related liver disease. But yesterday's report by Public Health Wales showing that thousands of people who die from alcohol related problems had no... Continue Reading →

Blog news: Life sciences giants join forces to promote young people’s involvement in health research

Some of the leading life sciences organisations in the UK have joined forces to issue a 'statement of aspiration' about the involvement of young people in research saying: 'Collaboration between young people and commercial researchers should become an established and normal way of working. Learning from this collaboration should be actively translated wherever possible to... Continue Reading →

Have you joined the new online course revolutionising the way the public can learn about clinical research? @NIHRCRN MOOC

I do not ascribe to the view that you have to be 'scientific literate' as a pre-requisite to taking part in science.  In the same way that I do not think you need to be fluent in French before you can enjoy a holiday or set up home there.  Nothing beats immersion in the way of... Continue Reading →

From ‘spacewalking’ patients to Bowie, the literature on public involvement in research reached new Peakes this week

It's one of the hardest things they will have to do.  It is physically and mentally draining.  For many it will feel a lonely place.  The atmosphere will be unlike anything they have ever experienced before. Some will feel as if they are in a state of suspended animation. Others will feel as if they have leapt off a cliff... Continue Reading →

NIHR revamps another route for patients, carers and the public to submit their ideas for research

Making sure that research funded by the NIHR, charities and industry reflects the needs and priorities of patients, carers and the public is one of the most important agendas in public involvement. It has been a focus for much activity over the years with the outstanding James Lind Alliance (JLA) Priority Setting Partnerships (PSPs) being the... Continue Reading →

The divide between public involvement in research and service delivery

Yesterday I was on a visit to the West Midlands.  The University of Birmingham, Birmingham Health Partners and West Midlands Genomic Medicine Centre (GMC) had invited me to talk about public involvement in research strategies for the region. Many organisations and voices were represented in the room.  The discussion was lively and, at times, challenging.  But... Continue Reading →

Blog at WordPress.com.

Up ↑

%d bloggers like this: