The low hum of mediocrity can never be acceptable to patients

You can’t beat a good juxtaposition. And August seems to throw up more than its fair share. It’s as if the soil, hard-packed by hardened hacks over many months, has been freshly tilled by novice reporters, revealing pearl white fragments of porcelain that say as much about now, as then. This is the slow news […]

Canada takes a whole-system approach to public involvement in research

Last week, at the INVOLVE meeting for NIHR public involvement leads, a colleague asked me whether our strategic review would get near to a national strategy. I said I was pretty confident it would. Otherwise what’s the point. You can see a copy of my presentation slides inducing an overview of the review findings here […]

What have people told us about public involvement in research?

Yesterday INVOLVE hosted a meeting of about 100 public involvement leads from across the National Institute for Health Research (NIHR). There are probably nearer 200 in total across the NIHR family. This was the first time that we have ever been able to bring together people in this way. A powerful milestone. This link will […]

Statins: medicine sprinkles its pills but this ain’t no fairy dust

When a news story features as a topic of conversation in the queue for the school play you know something is happening, right? On Friday I overheard two parents talking about statins while waiting for the doors to open for the final performance of the ‘Aristocrats.’ Earlier in the day the National Institute for Healthcare […]

It’s the citizen, stupid!

Before I start is anyone else struck by the similarities between the hysteria of some science commentators over the new Science Minister, Greg Clark’s, signing of an EDM about homeopathy in 2007. And the reaction of the enslaved and brainwashed monsters in Monsters Inc to being touched by a child or even just their clothing […]

Patients as renewable energy? We’re bloody knackered Simon.

You may recall a few weeks ago the new NHS Chief Executive, Simon Stevens, referring to patients and carers as the ‘renewable energy’ in health and social care. A good notion. A noble notion. Yet I am having far too many conversations at the moment which are with, or about, colleagues who are flat-out exhausted […]

Lessons I learnt from the Alzheimer’s Society story of public involvement in research

The Alzheimer’s Society has published a new booklet entitled ’15 years of the Research Network.’ It looks at the work of their Research Network of 250 people with dementia and carers in shaping and advancing the charity’s £5.3M research programme, some of their achievements, and a short history of how it all got started. […]

The double standard in research that holds public engagement back

I listened to the radio this morning with rising irritation. Two scientists were locked in debate over the EU Human Brain Project. Yes, it would be farcical if not true, but the EU (including us I presume as an EU member state) is pumping huge amounts of money into a hair-brained idea to replicate what […]

Bereaved parents of babies in clinical trials want ongoing involvement in research says NIHR funded study

There is a lot of research that we hear about in the media which enthrals and amazes with big numbers, amazing finds and clever ideas isn’t there? And then there is research that I find genuinely affecting for one reason or another. More often than not, because it tells us something about the human condition.  Sorry […]

Blog: public involvement is not built on one-night stands

Some time ago I took part in an event where the organisers thought it would be a good idea to try something new. As well as the usual plenary speakers and workshops, we were going to get people there to text and tweet questions which speakers and panellists could answer during the day. Sounded perfectly […]

3 million and rising: the secret to recruiting more patients to trials could lie in better training for doctors and nurses

3 million patients have been recruited to clinical trials over the past six years. That was the impressive bit of news put out by the National Institute for Health Research (NIHR) Clinical Research Networks yesterday. You may have heard its Chief Executive, Jonathan Sheffield, on local radio talking about we have got here and the […]

Sorry, did I go off? Do patients have a use by date in research?

Most of my friends and family are often staggered at how complex we have made this supposedly simple thing called public involvement? How did we end up creating something with more wiring and circuitry than the first computer? Who is going to design the first public involvement microchip that reduces this tangle to something we […]

Ex-offenders take up mantle as peer researchers in pioneering @PenCLAHRC study

This is an excellent example of service users being involved in a study as ‘peer researchers’ and deserves attention beyond the readership of the Plymouth Herald. Engager II might sound like the name of a spaceship but it’s actually the name of a study which intends to look at the mental health issues faced by prisoners […]

Public involvement in research: what sort of Masterchef are you?

It was a miserable York City Centre that I walked through late last night to get to my hotel. All the hopes and anticipation of early evening had dissolved on a football pitch halfway across the world. A dull and sullen murmur was all that was left. Never mind. We still have Masterchef. Or Celebrity […]

Gloves off: poetry gets to the heart of the matter when it comes to illness

Last night I was getting ready for this evening’s ‘Order, Chaos, and Chronic Illness’ event at the Theatre Royal, York. 300 people will be joining me to hear leading poets, Simon Armitage, Gillian Clarke and Blake Morrison, read their work and discuss the relationship between poetry and illness. Part of York’s Festival of Ideas it […]

Partridge Review’s elegant demolition of past practice on personal data offers opportunity for fresh start with the public

Sir Nick Partridge’s review published today, of data releases by the NHS Information Centre, is an elegant demolition of all that has gone before in the way in which medical records have been commoditised and shared with public and private sector organisations.  Everyone should read it. I am sure that many better informed people than I […]

Spend £1 on cancer research and get 40p back every year: what’s not to like?

Today the All-Party Parliamentary Group for Medical Research holds its summer reception in parliament. This annual event has become an important fixture on the health research calendar. The ‘great and the good’ assemble to focus on a key issue of the day and to network. At some point in proceedings they will be addressed by […]

Blog for the day: how would you measure public involvement in research?

Originally posted on simon denegri's lay review:
I bet even academics secretly have little sayings up their sleeves that have no evidence base but help them make sense of campus and the wider world. One of mine is: politicians like targets, academics like frameworks, professionals like guidelines and patients…well, we just like to get…