Privacy campaigners have reacted with concern to the announcement by Health Secretary, Matt 'Prime Membership' Hancock, that the NHS and Amazon have done a deal to provide health advice through its Alexa smart speakers. The concerns need addressing although I feel a lot more chilled out about it than some of the things Alexa already … Continue reading A conversation with Alexa about public involvement in health – ‘Sorry, I don’t know that one.’ #digitalPPI
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 ‘Sticking with it’ – retention issues in public involvement and health research
It's all over the media today...... Only about one third of the British public say they trust the evidence derived from medical research. Confronted with media hype, claim versus counter-claim, a paucity of good quality accessible information and time-short GPs, and with few reliable tools to help them, patients are struggling to make sense of … Continue reading A good dose of public insight is needed to help the medicine go down – new @acmedsci report! #evidence
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 Seeing the patient and carer behind the many faces of ill-health #multimorbidity @JLAageing @OfficialNIHR @EngageFMS
One of the things I feel incredibly fortunate about in doing my role is that people send me all sorts of interesting papers, articles, videos and other stuff. I do get round to looking at them all, although it can take me a bit of time. More often than not something will bubble to the surface … Continue reading A new paper on ‘involving people with intellectual disabilities’ in the STOP #diabetes study holds lessons for us all
I was at Camden Town Hall on Monday night with a couple of hundred other citizens. We came together to talk about clinical research and I got a real kick out of it. The occasion was the first ever 'Clinical Research Education Event' held in the UK by the American non-profit organisation, the Centre for … Continue reading A town hall meeting in Camden held a mirror up to public engagement British style and it wasn’t pretty
I didn't think so. Do you get those nagging calls about PPI? It's usually early evening. Sometimes it is a recorded voice message. Sometimes a text. Very occasionally it is a real person from the unreal environment of a call centre. Unfortunately they are all contacting me about that other PPI - yes, Payment Protection … Continue reading Blog: Have you ever knowingly been oversold PPI in research? Then, there’s help at hand #howtoinvolve
It is said that when Robert Sherman sat down to write 'A Spoonful of Sugar' he was inspired by his children's tale of being given their polio vaccine on a sugar cube. The iconic song from Mary Poppins, lyrically captures a moment in time when the relationship between society, medicine and research was a more … Continue reading Mary Poppins no longer has the answers in medicine – for either doctor or patient
Polonius: [Aside] Though this be madness, yet there is method in't. Hamlet Act 2, scene 2, 193–206 If you are in some way connected to public involvement in health research then you get used to 'the look.' Sometimes it's a vacant stare or a gaze falling slowly across the face like the sun going down. In other instances … Continue reading There is indeed method in our ‘madness’ – being METHODICAL about public involvement
Rarely a week goes by without the news reporting that archaeologists have found skeletal remains or cave paintings which tell us something new about the evolution of man. Each finding, we are told, means we must readjust our thinking about how we have developed as a species. From the moment we first walked, to that … Continue reading What’s your earliest memory of public involvement in research?
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 Patients and researchers – sparring partners not hostile combatants
This time last week I was in France eating baguette and cheese and drinking red wine. Today it's a tuna sandwich and packet of Hula Hoops. Yes, like many others in the UK's version of France's 'La rentree,' I am returning to work with a bump. A little later I am off to NHS Expo. It's the … Continue reading Public involvement can appear like a foreign country to colleagues. Let’s make it a land they want to come back to.
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 The divide between public involvement in research and service delivery
PatientView - the originators of the excellent myhealthapps.net directory - published an important piece of work this week entitled: 'What do patients and carers need from health apps - but are not getting?' You can download it here. Their report looks at the results of a survey they conducted of over 1,000 patients and carers across Europe … Continue reading Blog: I have ‘This Feeling’ – Could 9 out of 10 health apps be simply useless from a patient and carers point of view?
Its probably not the done thing for a National Director to applaud direct action. So I won't. But I couldn't help but warm to the recent appeal by Professor Luke Clements for carers to get in touch with their militant side. Prof. Clements advised the parliamentary committee that looked at the Care Act. In his recent talks around … Continue reading Going commando in public involvement in health research
As a democrat it doesn't sit well with me that the new interim Major of Greater Manchester is unelected. The excuses for it seem pretty poor. You should start as you mean to go on. Perhaps we should have sensed something was up when 'DevoManc' emerged as the nickname for the entity that will be … Continue reading Blog: our regions will need a stronger patient voice if health research gets the devolution bug
Hot off the presses: Almost a year to the day that the Director General Research and Development/Chief Medical Officer commissioned a strategic review of public involvement in the National Institute for Health Research (NIHR), the final report and recommendations have today been published. Simon Denegri, the National Director for Patients and the Public in Research … Continue reading Review of public involvement in NIHR published #ppiextramile
'Purdah' will very shortly fall over Whitehall as the General Election looms. At the end of March the airspace over government will be closed for six weeks or so. No new flights of Ministerial fancy can take off. Those already in the air may continue on their way but must do so in radio silence. Still, … Continue reading Old rules need not apply – Is Apple tearing up the rule book with #ResearchKit?
Of all the dementia initiatives announced by the Prime Minister, David Cameron, this weekend it may prove the pivotal one. It may not grab headlines in the same way as £ commitments to research or new institutes (although it is doing pretty well). But, without it, this expenditure will be worthless. For other patient populations it … Continue reading Sign-up to help step-up research into dementia: new service enables people to volunteer for research studies #joindementiaresearch @beatdementia
Who knows, patients and the public might one day get to walk on the red carpet ?