Musings on the role of senior academics in supporting public involvement in health research in universities and institutions

This blog was originally inspired by a passing reference I saw in a research proposal. In talking about their plan for public involvement the applicants referred to a 'Senior Academic Lead for Patient and Public Involvement...' It got me wondering. OK, initially, it spurred me on to sit down at my computer keyboard and huffily... Continue Reading →

Should we have a meaningful vote on the definition of public involvement in health research?

Should we have a meaningful vote on the definition of public involvement in health research? Better still a series of indicative votes to find the most preferred definition? Perhaps it would be simpler to go to the polls on revoking the INVOLVE definitions we have grown to love (or hate, depending on your point of... Continue Reading →

New guidance on what it is to be a public co-applicant in research launched by @NIHRINVOLVE @HRA_Latest and @NHSRDForum

According to the recent national survey of people's experiences of being involved in National Institute for Health Research (NIHR)*, one in five patients, carers and members of the public told us they had been a 'co-applicant' in research. An equivalent number described themselves as being a 'member of a research team.' As a member of... Continue Reading →

A view about the health secretary’s announcement on healthy volunteers and DNA tests

Quite a few of Saturday's papers covered the health secretary's announcement that he wants the NHS to offer healthy 'volunteers' the option of paying to have their DNA analysed. The goal is to recruit 5 million volunteers resulting in masses of data which can be used by researchers to further understanding and develop new treatments.... Continue Reading →

While you were away…..10 things you may have missed in public involvement in health research since last year!

A Happy New Year. Here are ten things you may have missed while away. Or could possibly miss over the next 12 months if you don't know about them now! The NHS Long-Term plan (#NHSLongTermPlan). It's being published tomorrow. Complete with a section on research and innovation that will encompass a focus on public engagement... Continue Reading →

Public involvement is beset by headless chicken syndrome in too many organisations

Last week I trundled up to Leeds for a conference about patient data. Hosted by Health Data Research UK, the National Institute for Health Research (NIHR) and NHS Digital it brought together patients and carers, data scientists, researchers, health professionals and managers for a discussion about the future of data-driven health research. The conference started... Continue Reading →

National Feedback Survey: What’s it like being involved in NIHR research? #MyNIHRfeedback

National Feedback Survey: What’s it like being involved in NIHR research? #MyNIHRfeedback What has been your experience of being involved in NIHR research? If you are a patient, carer, service user or member of the public who has been involved in our work then NIHR would like to know. You may have helped design a... Continue Reading →

Public involvement in research: what’s the point? #researchertraining @UCLHresearch

I suspect we all have moments when we will question the point of public involvement. Even those of us who are die-hard advocates. In the same way that the clergy seek to better understand their faith. Or scientists question Mark Walport. Researchers who are at the beginning of their carers are more entitled than most... Continue Reading →

Fantastic! Ground-breaking initiative gives people with dementia the chance to lead their own research about their condition @Innov_Dementia

Two former colleagues of mine - Rachael Litherland and Steve Milton - who run an incredible organisation called Innovations in Dementia have been awarded a Big Lottery Grant to run this new initiative which will provide people with dementia the opportunity to research their condition. So good to see this happening. Who better to DEEP... Continue Reading →

Public involvement: do your parents know where you are? #CochraneForAll

Over a thousand people will be converging on Edinburgh in Scotland today for the Cochrane Colloquium. From the outset the organisers have committed to running the event according to 'Patients Included' principles. It shows. The public involvement content in the programme is more filling than a Scotch Broth. Attendees will need to pace themselves that's... Continue Reading →

‘White hot heat’ is not good for a tech-driven NHS but patients and health profs could be – comment #AI

There's a part of me that's warming to the new Secretary of State for Health, Matt Hancock. At least he has a passion - technology.  So much so, that the health tech sector and techies must be drooling at the prospects. Last week Mr Hancock set out his 'vision for a more tech-driven NHS' at... Continue Reading →

We must all sharpen our pencils if we are to burst the biomedical bubble @jameswilsdon @RichardALJones

One good thing about sleepless nights in this weather is the opportunity to catch up on your reading. In the wee small hours of this morning I decided to read a report entitled 'Bursting the Biomedical Bubble' authored by Richard Jones and James Wilsdon and published by the excellent Nesta just two weeks ago. It... Continue Reading →

If research funding can sometimes appear like a poker game, what cards do we hold as a patients and the public?

I once went to Las Vegas. It is a long, long time ago now. But I remember it being a very strange experience. Everything is turned in on itself. Away from the inhospitable heat of the sidewalks. Or, more accurately, everything - from hotel bedrooms to burger joints and cocktail bars - is turned to... Continue Reading →

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