Fighting talk does not improve lives @macmillancancer @DyingMatters

Macmillan Cancer Support has today drawn attention to the negative impact of 'fighting talk' on people living with cancer. The charity says the findings of its latest survey show that people find it more difficult to talk honestly about their experiences because of the pressure they feel to be positive. One in four people said that they... 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 →

Comment: @ABPI_UK survey reaffirms gap between public appetite for, and patient perceptions of access to, health research and innovations

The Association of the British Pharmaceutical Industry (ABPI) is shaping up for its annual conference later this week. I see from the programme that the heavy-hitters of British science such as Sir Mark Walport from UK Research and Innovation (UKRI) will be out in force to give their perspective on the big picture. As a... 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 →

UK public involvement in research standards launched today – seeing the wood and the trees. #PatientsFirst2018

Today, the National Institute for Health Research (NIHR), Chief Scientist Scotland, Health and Care Research Wales and the Public Health Agency Northern Ireland, launch UK-wide standards for public involvement in health research. You can find them here: https://sites.google.com/nihr.ac.uk/pi-standards/standards Building on INVOLVE’s values and principles for public involvement published several years ago, the standards have been... Continue Reading →

Messages about health research are not being heard at home where they should be – HRA/NIHR public survey Blog #2

My blog yesterday, looking at the latest public poll results published by the Health Research Authority (HRA) and the National Institute of Health Research (NIHR) (https://twitter.com/sdenegri/status/971701304849522688?s=21) looked at the question it raised around diversity and inclusion. But there are other important findings it is worth reflecting on. That almost half of survey respondents said they... Continue Reading →

I’m pro co-pro are you? The march of co-production continues – here’s the final guidance from @NIHRINVOLVE on the principles of co-production #Coproduction

Two blogs in one day. Blimey. I'll be giving away small packets of face cream or toys with the next issue at this rate. Someone asked me recently whether co-production was going to be the only thing that mattered in the future. Is all that is currently known as public involvement going to be painted... 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 →

New award launched for service user and carer involvement in mental health research studies by @McPinFoundation @NIHRCRN @MQmentalhealth closes 30 March 2018

It's enough to warm the cockles of your heart on a cold day...... The National Institute for Health Research Clinical Research Networks (NIHR CRN) together with two excellent mental health research charities - McPin Foundation and MQ Transforming mental health - have just launched a new award for service user and carer involvement in health... Continue Reading →

JUST OUT – Latest news on the international network for public involvement and engagement in health and social care research. #globalPPInetwork

Last November, on the eve of 'INVOLVE at 21,' colleagues from across the world gathered in London to launch an international network for public involvement in research. If you click on the picture caption below you will be able to read the network's first bulletin including a report of what happened on the day, interesting... Continue Reading →

On it’s 3rd Anniversary Simon Denegri looks back at how people with dementia and carers helped build Join Dementia Research @beatdementia #JDRbirthday #dementia

This Saturday 24th February Join Dementia Research (JDR) celebrates its third birthday as a fully functioning service where people can register their interest in participating in dementia research. I am very proud to have been a small part of the JDR story. I Chaired the Lay Champions Group (see below) at the very beginning of... Continue Reading →

There’s more light than Nordic noir in this Swedish statement on citizens in research (why don’t we talk about mobilising citizens?)

So, to cut a long story short, the European Union (sigh) is developing its next framework programme for research and innovation (R&I) ( to be known as FP9). Cue lots of consultations and papers being submitted on what FP9 should look like. I was taken with this statement in one such submission sent to me... Continue Reading →

Charity calls for more research funding do not get to the heart of the matter

Calls for more health research funding on this or that condition is the one issue where I have seen sympathy within Government decrease over the years: in inverse proportion to the growing number of campaigns by charities, patient groups and others calling for more cash. Lung cancer and mental health are two conditions where the... Continue Reading →

James Lind Alliance PSPs are 50+ not out and I am glad they are batting for patients #prioritysettinginresearch @LindAlliance @OfficialNIHR @NIHRINVOLVE

James Lind Alliance Priority Setting Partnerships (JLA PSPs) are arguably one of the  most successful initiatives in public involvement in research in the UK over the last 10 years. They are the 'go to' methodology for defining patient, carer and health professional priorities in research; particularly for charities and patient groups who see them as... Continue Reading →

The future of child health lies with children…if only they were empowered. #childhealth @RCPCHtweets #PatientsEU2018

Without wishing to open old wounds, one of the most miserable political decisions tangled up with Brexit was the denial of the right to vote in the referendum to so many young people whose future is at stake. Even if I could be persuaded about the insurmountable legal problems of giving young people under the... 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 →

Patients have long been working their way upstream in drug research. At last they are up the creek with a paddle. #publicinvolvement #patient-centricity

Patients and carers will tell you that all that is good or bad about health research can usually be traced to its source. That place where the idea is first formed by scientists. Eureka moment it might be, they will say, but having patients and carers involved from the beginning can save embarrassment for all... Continue Reading →

Artificial Intelligence, Robots, Shiny Things and Public Involvement: is the future about empathy not coding? #AI #robotics #ArtificialIntelligence

Artificial intelligence, robots and all things shiny have taken the New Year by the scruff of its neck. A matter of days after Big Ben woke from its enforced convalescence to announce the start of 2018, than the BBC was meeting robots at one of the largest tech shows in the USA: http://www.bbc.co.uk/news/technology-42657607 I am... Continue Reading →

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