We are looking for feedback on the #NIHRoktoask campaign from patients, researchers, everyone…. Please help and RT.

We are the only country which runs a public awareness campaign across our national health system to encourage people to participate in clinical research – NIHR ‘OK to ask’.  We’ve been doing it for three years on the trot to coincide with International Clinical Trials Day (ICTD) in May.  Now we want your views on how this year’s campaign went and what we should do next.

It doesn’t matter if you are a local organiser for the ‘OK to ask’ campaign, a patient or carer who took part in an event, a researcher or clinician who helped out.  We want to hear from you. And if you need a little reminder of what happened here’s a ‘storify’ of the year’s events.

But even if you have never heard of the National Institute for Health Research (NIHR) (let alone ‘OK to ask’) before, we’d still like to get your views.  For what you tell us will be used to:

  • produce a report about the ‘OK to ask’ campaign in 2015 this year which will be made publicly available on NIHR’s website and through our networks.
  • think about and plan our public awareness work about research for the future.

You can complete the online survey by clicking on the link here.

And there’re plenty of time to also send on to your friends and colleagues because the survey is open until Friday 11th September 2015 to respond.

Thanks in advance for your help.

Best wishes as ever,

Simon Denegri
NIHR National Director for Patients and the Public in Research
Simon.Denegri@nihr.ac.uk

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.

It’s NIHR Friday: NHS Trust research activity stats published

You didn’t think I’d forget NIHR Friday did you?

So the National Institute for Health Research Clinical Research Networks Co-ordinating Centre (NIHR CRN CC), together with The Guardian online, has this week published its annual performance tables for research activity in each NHS Trust in England for 2012/13.

You can find the figures for your local NHS Trust here. For each Trust data is provided on the number of clinical research studies recruiting during the year, along with the overall number of patients recruited into all studies.  Comparative figures are provided for 2011/12 so you can see whether activity has increased or not where you live.

Overall the news is very good indeed.  More than 630,000 people were recruited into clinical research studies.  That’s a 7% increase on the year before.  During the year NIHR CRN supported more than 4,200 studies and that’s a 12% increase on 2011/12.  There are some nice, simple summary reports available through the NIHR CRN CC website here (look for the pdfs at the end of the page).

A good year then.  But it can get better.  Hence the importance of the ‘Ok to ask’ International Clinical Trials Day (ICTD) campaign this year.

This week I was fortunate to see the early feedback and results from the campaign (in fact some of them are in my Leeds presentation which I posted yesterday).  There is much to celebrate.  You can be sure we will be continuing with the theme and perhaps we need to join-up the performance stats and the ‘Ok to ask’ activity in some way?  How about a ‘Rapid Reaction Ok to Ask’ taskforce to focus on the areas where we need to do most work?

Have a good weekend.

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Survey raises questions over NHS research

So it was an early start for me today, doing radio interviews for International Clinical Trials Day today.  I’ll post the links to one or two when available.  Here’s the press release from NIHR CRN which was the news peg for the interviews.

NEWS RELEASE TEXT (HEADLINE AS ABOVE)

The results of a new survey, published on International Clinical Trials Day (21 May), have shown that most people are not aware that research is a core part of the work of the NHS.  The survey raises concerns that patients could be missing out on opportunities to take part in potentially beneficial clinical trials as a result.

Research studies are the way that healthcare professionals gather robust evidence about what  works best, in order to improve treatments for patients now and for the future. 

The NHS Constitution states that the NHS will do all it can to ensure that patients are made aware of research opportunities relevant to them.  However, a new survey (conducted by One Poll on behalf of the National Institute for Health Research Clinical Research Network) has found that:

Only 21 per cent of people surveyed were aware that carrying out research is a key activity for the NHS, yet…

82 per cent of people surveyed said it is important for the NHS to offer opportunities to take part in healthcare research

Less than seven per cent of people surveyed said they would never take part in a clinical research study.

These figures on consumer attitudes are in stark contrast to an earlier survey of healthcare professionals, carried out by Health Service Journal magazine last year, again on behalf of the National Institute for Health Research Clinical Research Network.  In this survey, 61 per cent of healthcare respondents said that research was peripheral in their NHS Trust, with only 38 per cent agreeing that research is embedded in planning and performance at board level.

Commenting on the findings, Dr Jonathan Sheffield, chief executive of the National Institute for Health Research Clinical Research Network, said:

“Research is core business for the NHS, so we need to encourage patients to be more demanding of their doctors and NHS institutions when it comes to offering the chance to take part in research activity.  We also need to do everything we can to encourage a research culture at all levels in the NHS. It is high time that NHS Trust boards put research on their radar.”

Whilst the surveys show that more work is required to build the profile of research activity in the NHS, there has been significant progress in recent years.  The National Institute for Health Research Clinical Research Network recruited more than half a million NHS patient volunteers into research studies last year, and this number continues to increase.

The organisation is also sponsoring an award for NHS Trusts who have made the most progress in embracing research at an institutional level.  

Dr Jonathan Sheffield said: “Research is not just an activity for the big teaching hospitals.  We need district hospitals and GP surgeries to rise to the challenge.  Many have already started to do so, but it’s important that it keeps progressing.  With an ageing population, the demands on our health service just continue to grow.  Research is the best way we have to work out the most effective and efficient ways to meet patients needs.  We need to take note of this survey, and keep pushing for research to have the profile it deserves with doctors and their patients.”

 ENDS