Clinical research takes to the streets for International Clinical Trials Day (ICTD) 2015 #NIHRoktoask #trialsmatter #clinicaltrialsday

Happy International Clinical Trials Day (ICTD) 2015 everyone!

Today over 100 NHS Trusts will be taking part in NIHR’s ‘OK to ask’ campaign aimed at raising public awareness of clinical research and encouraging patients to take part in clinical studies.  There will be displays in hospital receptions and staff canteens, mock trials with chocolate (yummy!), Open Days and talks.

But this year the #NIHRoktoask campaign has also taken to the streets.  There’s a ‘Research Bus’ touring town centres in Gloucestershire, a ‘Research Trail’ for young people at Great Ormond Street, town halls being taken over, ‘flash mobs’ in city centres, and information stalls outside  supermarkets (with even more chocolate I hope).

Social media has been particularly active this year.  If you have a spare moment this lunchtime (Wednesday 20 May) I hope you will take part in or listen to the Medical Research Council Clinical Trials Unit (MRC CTU) ‘tweetchat:’ ‘Why do clinical trials matter?’, with #trialsmatter as the hashtag.  They have four panellists who will be answering questions, and the Q&A will take place from 1-1.45 BST on Wednesday 20th May.  More details here.

You may also like to read the transcripts of the other twitter conversations NIHR has hosted on (just click on the relevant disease): cancer, diabetes, dementia, mental health, and stroke.

A quiet revolution is taking place.  Now in its third year the #NIHRoktoask campaign is a movement from the ground up.  It is driven by the passion and commitment of patients, researchers, nurses, doctors and managers working together to share the message that clinical research is vital, that it needs patients and healthy volunteers to come forward if we are to find new and better treatments and therapies. And they should be encouraged by what other patients tell us.

Our UK Clinical Research Facilities (UKCRF) Network will today be displaying a poster in their unit which shows the results of a survey they have done with over 700 patients about their experiences of research.  99% said that information was explained clearly to them on their visit – often with the help of patient and public volunteers, 97% said they would recommend taking part in research to their friends and family.   You can find the survey results here.

A few mornings ago I was walking down a London Street and passed one of those electric cars having its battery charged.  With its plug and long, dangly wire it seemed rather incongruous.  The scene would have been inconceivable ten years ago.  But not now. In fact, we might all be fighting over ‘car chargers’ rather than parking spaces before not too long.

In a similar vein, even five years ago this sort of activism about clinical research would have seemed impossible – desirable but impossible. But now it’s here.  And it’s where it should be – with and alongside the communities it seeks to serve.

Have a great day.

Dancing with Purdah

Were I dancing with the starlet of ‘The Avengers’ – the revered spy-fi tv show of the sixties – it might be news. But sadly not.*

No, I am referring to the silence that falls across Whitehall during a General Election and is intended to ensure the fight between political parties is a fair one.

Before the General Election was called and given my role, I decided I would apply the same rules to myself as cover others working in government during a campaign.

No one told me to. In fact, no one in Government has ever asked me to amend or take something off my blog. Maybe that says more about my blog than them!

Anyway, I thought I would ease off the blog for a few weeks; after all, a change is as good as a rest. But mostly out of respect for the convention which is a good one.

So this is a momentary pop-up blog to bring some interesting stuff to your attention. As many as I can write during my train journey home from Cardiff anyway.

We are now less than three weeks away from NIHR’s ‘OK to ask’ campaign for International Clinical Trials Day on 20 May. Details including how to order leaflets etc here: http://www.nihr.ac.uk/get-involved/ok-to-ask.htm
Watch out for the weekly Twitter chats with patients, doctors and nurses about research in different conditions and how you can take part.

Someone said to me a few days ago that the ‘OK to ask’ message was a bit patronising. I can only answer this by saying that the biggest mistake you can make as a speaker is to assume your audience have already heard something.

There’s a helpful video about the new JoinDementiaResearch website now available on YouTube: http://youtu.be/BRbpXJ5WCLI
I understand that Twitter and Facebook are regarded as passé by young people these data and its YouTube that matters. So, nice job JDR.

The Academy of Medical Sciences has published the report of its symposium earlier this year entitled ‘Patient adherence to medicines’ see here: http://www.acmedsci.ac.uk/policy/policy-projects/patient-adherence-to-medicines/

INVOLVE have a frequently updated news page and there’s a new entry today about McPin and mental health. I won’t steal INVOLVE’s thunder or McPin who I love : http://www.invo.org.uk/news/

A good colleague – Kristina Stanley – has got off to a cracking start with her new blog about public involvement http://kristinastaley.com Her first piece is entitled ‘It’s a trip.’ Read it and follow it!

A few weeks ago there was a good BBC Radio 4 ‘You and Yours’ feature about public involvement in rare diseases. You can listen to it here: http://www.bbc.co.uk/programmes/b05qfkjp

And that’s it until May 8 or thereabouts my friends. Enjoy the rest of the election.

*Those who know their history will of course know that the character’s name is ‘Purdy.’

Consent for medical research comes under scrutiny yet again: time for ethics committees to stop second-guessing the public?

This is a really interesting study published in PLOS ONE today.  Eessentially it’s a survey of the attitudes of 2300 participants in TwinsUK (a national biobank) to giving their consent to medical research.  The full paper can be found here.

The results of the survey would seem to highlight what has been a growing theme in the debate about ‘consent’ over many years now: that participants actually have a more flexible and pragmatic attitude to giving their consent than is assumed in the current regulations and regulatory framework.

They certainly want to know the researchers who want (in this case) their data; but they are happy to consent online, and to give an extended warranty for its multiple use over a good period of time.

You could say this is just one study. But the recent Health Research Authority (HRA) public dialogue exercise that I Chaired and which will be published later this year yet again found that the public are remarkably chilled about the things that exercise policy-makers and campaigners most.  Which suggests we probably need to trust our fellow citizens a lot more than we do at the moment.

When I wrote about the latest INVOLVE/NRES study of public involvement in research applications a few weeks ago I was surprised by the response. In the main it was not about which funders were worse at doing public involvement.  No, most people vented their  frustrations about the attitude of ethics committees to proposals for getting consent, public involvement or public engagement in research applications.

They (both researchers and lay people) reported that often these were sent back with a request that they ‘do it again.’ Even though the public have been involved in their design.  And in spite of ethics committees having lay people as members.  Which suggests a certain mindset has taken hold in these local fiefdoms.  A mindet which is not about ‘right touch’ regulation but about ‘always being right’

I know the HRA is on the case of this issue and has indeed been working hard on educating and training ethics committees members.  But iIt’s an area ripe for reform.  In the meantime perhaps ethics committees need to chill out more and, at the very least, stop second-guessing the public in whose interest they are supposed to be acting.

 

Stop ticking the box (disarming a bureaucrat) #tokenism #NHS #bureaucracy

It’s world poetry day today and, as you may know, I try to publish a verse or two to mark the occasion each year. I was going to read this at the East Midlands Academic Health Science Network (AHSN) event ‘Stop ticking the box’ event last Monday.  But time did not allow.

This is for all patients, carers and their families – and for that matter our health professional colleagues – contending with meaningless ‘tick box’ bureaucracy and tokenism in health nod social care.

I hope you’ll the poor formatting.

Stop ticking the box (disarming a bureaucrat)

Please!
Put your pencil down
Slowly.

Now your clipboard
Slowly.

In front of you.
Where I can see them.

Now put your hands
Where I can see them

And listen.

II

A pox on your crosses
Your ticks in your boxes.
Take a hammer to your computer
Take a flame to your procedure.

Stop it with your bar codes
Your jargon and your data.
You look like a robot, roaming the floor
One like you, has asked me this before.

In bed, drip fed, flat on my back,
I might be. But I’m not a flat-pack
Patient made-to-order, with whom to go through the motions
Who has no emotions.

Don’t ask me to do your survey
To join your panel or committee
That’s just tokenism for you to parade
In front of your masters, what a charade!

Stop watching the clock
Tick tock, tick tock.
Stop ticking the box.
Get out of your box.

III

My name is [….]
And I’ll tell you anything you need to know

But don’t consign it
To a box.
It doesn’t fit
In a box.
You won’t find what you need
In a box.
You certainly won’t find me
In a box.
Stop ticking
The box.

IV

Let’s stop for a moment
And forget your instructions
Let’s think for a moment
And work on some solutions

For I think you’ll find
That once we’re talking
We’ll tick all the boxes
Both yours and mine.