‘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 →

A good dose of public insight is needed to help the medicine go down – new @acmedsci report! #evidence

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 →

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 →

A new paper on ‘involving people with intellectual disabilities’ in the STOP #diabetes study holds lessons for us all

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 →

Blog: Have you ever knowingly been oversold PPI in research? Then, there’s help at hand #howtoinvolve

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 →

Mary Poppins no longer has the answers in medicine – for either doctor or patient 

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 →

There is indeed method in our ‘madness’ – being METHODICAL about public involvement

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 →

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 →

Public involvement can appear like a foreign country to colleagues. Let’s make it a land they want to come back to.

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 →

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: I have ‘This Feeling’ – Could 9 out of 10 health apps be simply useless from a patient and carers point of view?

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 →

Sign-up to help step-up research into dementia: new service enables people to volunteer for research studies #joindementiaresearch @beatdementia

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 →

Blog at WordPress.com.

Up ↑

%d bloggers like this: