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 →

Hey Prof! We need to talk about feedback. It’s not about ‘closing the loop’ but learning together. #PPIFeedback #NewGuidance @CRIPACC1

If you haven't read Elspeth Mathie (@elspeth_mathie) and colleagues' excellent paper 'Reciprocal relationships and the importance of feedback in patient and public involvement: A mixed methods study'  in Health Expectations then I highly recommend a read over the next few days.   Their small but significant study  - which was funded by the National Institute for Health... Continue Reading →

‘Sticking with it’ – retention issues in public involvement and health research

This week I had the good fortune to be on the judging panel for the NIHR Clinical Research Networks/McPin Foundation/MQ 2018 award for service user and carer involvement in mental health research.  It was a brilliant field to choose from. The winners will be announced very shortly. One of the reasons I readily take up... 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 →

Here’s hoping the announcement of the @OfficialNIHR #LetsGetDigital winners means others will catch the digital bug

Thought I would gently ease myself back into things after almost a month's total social media detox at work by posting this news story from the National Institute for Health Research (NIHR) announcing the winners of #LetsGetDigital..... The votes have been counted, the judges have had their say and the winners of the 2017 NIHR Let’s 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 →

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 →

Seeing the patient and carer behind the many faces of ill-health #multimorbidity @JLAageing @OfficialNIHR @EngageFMS

Last week I attended a National Institute for Health Research (NIHR) workshop on older people with complex needs.  The more common term used in medical and scientific circles for 'complex needs' is 'multi-morbidity.'  Which means suffering from two or more conditions at the same time. But I prefer the former term. As statistics from the Office... Continue Reading →

The post-Brexit liberalisation of #clinicaltrials could be the way to a bolder ambition for the UK

There is much post-Brexit talk of using our new-found political independence to liberalise clinical trials in the U.K. We can cut ourselves free of all that terrible EU red-tape that has weighed us down. Or so the argument goes. We can be quicker and more efficient than other countries. We will be more attractive 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 →

Patients and researchers – sparring partners not hostile combatants

I am in Helsinki, Finland, for a few days this week, sitting on a review panel for the 'Joint Programme - Neurodegenerative Disease Research.'  It is the first time that this programme has involved patients in its review process for funding research so it feels a bit of a milestone moment.  This, after twelve months, of... 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 →

More on mobile technology and health research…. #ResearchKit and @OfficialNIHR photo competition on theme of diversity and equality

Interesting news from the US last night that a number of pharmaceutical companies - GSK and PurduePharma being the ones cited - are now looking into the use of Apple's new 'ResearchKit' app in clinical research. 'ResearchKit' was launched in March this year with many saying it would be a game-changer in medical research.  My understanding is that... Continue Reading →

Cystic Fibrosis Gene Therapy Trial testament to the cf community as a positive, patient and persistent partner in research

I hope you will have seen or heard the news today of the positive results of a gene therapy trial for people with cystic fibrosis. And this is how The Guardian is reporting it. Although it is early days and the improvement shown in patients only a modest one, it is nonetheless a very hopeful... Continue Reading →

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