clinical research

Hats off to the National Institute for Health Research (NIHR) Clinical Research Networks who published the latest data on patient experience in research this week. They have now been tracking patient views on participation for three years and with each report we gain a more informed picture of what matters to them. And with the sample now rising to nearly 5000 people, it’s become an extremely credible exercise.

The high positive ratings on overall experience (80+ %) are consistent with every survey I’ve seen in this field. But the report includes a neat synopsis of the recurrent themes in the data about what’s high on the priority list for patients including: motivation; research staff (constantly over-looked in public engagement efforts around health research); time; information; access issues. It will be interesting to see if and how these are highlighted in the PRIORITY Priority Setting Partnership looking at retention issues in trials.

What’s really clever about the report is that the authors – Mana Golsorkhi and Roger Steel – have then taken the findings and translated them into a series of recommendations for how issues might be addressed, charting these against different stages in the research pathway and then which organisations have responsibility for making it happen. In such a way they have shone a light on some of the weaker areas where further work is needed.

They also make some more pointed recommendations for each of the main issues identified above. I was taken with the proposal that each site (hospital, surgery etc). taking part in a clinical trial should carry out an ‘access audit’ which takes into account physical access, parking, time to travel etc. It’s a good idea. But i think it could be widened to a more general audit that is integral to assessing site feasibility.

Personally I would like to see all Clinical Trials Units and trial sites have Standard Operating Procedures (SOP) to cover public involvement and patient experience.

Great report. A good way to end the week.

My tickets for the FA Cup Final arrived in the post yesterday. I am very excited indeed.  I have a feeling that my team will bring the trophy home to south London where it belongs.

It is that time of year when football fans are living on their nerves as their team battles to win promotion or stave of relegation.  Fortunes – in every sense of the word – can change in seconds: a goal, a penalty decision, a sending-off.  Who knows what it will be?  I don’t expect everyone to understand this but to paraphrase Maxine Peake in the long-running legal drama, Silk: ‘It’s not about the football, it’s all about the football.’

You could say that, ten years ago, UK was in a battle to stay in the big league of countries doing clinical research.  Now it is regularly in the Champions League and often carries off a trophy or two.   The National Institute for Health Research (NIHR) has been instrumental if not pivotal to this success story.

I am deeply proud of the fact that patients and the public have not just featured in the NIHR story but have become an integral part of the NIHR team up and down the country.  It will be good to see many of them at a conference on Wednesday to mark the ten-year milestone.  I am particularly looking forward to taking the stage with a few of them to talk about how patients have made a difference to NIHR and what more we can do together in the future.

My passion for clinical research – like football – is very much a heart thing.  In fact when people sit down to explain the science to me I sometimes have the same expression on my face as someone trying to understand the off-side rule in football for the first time.  Perhaps I shouldn’t admit to things like that.  Nor, sadly, that I have been known to punch the air with joy at a news story about the latest, greatest piece of research. Just as I might a goal.

The sense of union one feels as a football fan – standing with thousands of others like-minded supporters – is conveyed in the singing of course.  Sometimes ebullient, often funny, occasionally imbued with a rich vein of gallows humour.  One of those chants is where the seated crowd are implored to ‘Stand up if you love….’ [insert team name].  And so we do, with alarms aloft, bellowing for our lives.

This time next week, across NIHR and the NHS we will be imploring people to do the same in the name of clinical research for International Clinical Trials Day (ICTD).  As I like to say to people, the NIHR ‘OK to Ask’ campaign and ICTD is more than just another awareness event.  It’s a pop-up festival with a purpose.

To shout loudly and proudly to patients and families across the UK that there is NHS research happening on their doorstep from which they might benefit. To thank the millions who have participated in studies to find new treatments over the last decade.  To enable patients, researchers, clinicians and health professionals to come together as a team and show others what they have been doing together in the name of research. With exhibition stands, events, tweet chats and a whole lot more at hospitals and institutions around the country from 20 May until well into the early summer.

UK clinical research is the team to beat.

OKtoAsk poster 2016

 

 

 

 

 

I do not ascribe to the view that you have to be ‘scientific literate’ as a pre-requisite to taking part in science.  In the same way that I do not think you need to be fluent in French before you can enjoy a holiday or set up home there.  Nothing beats immersion in the way of life in my view.

But I do believe the opportunity to learn beforehand can go a long way. It can build confidence. It can help you navigate the unfamiliar.  Plus it’s fun and exciting to feel as though you are learning new things.

Late last year the National Institute for Health Research Clinical Research Network (NIHR CRN) pioneered a new, free online course – otherwise know as a Massive Open Online Course or MOOC for short – entitled ‘Improving Healthcare through Clinical Research.’  It is open to everyone – from patients and the public to health professionals.

The course looks at the detail of research and how we do it. Brought to life through case studies, it covers topics such as; how research is helping to find new ways of treating and providing care for some of the major diseases including cancer and dementia. It also focuses on important ethical questions raised by clinical research.

It appears to be taking the world by storm. Quite simply thousands of people from around the world have signed up to take part in its first showing and raving about it.  Everywhere I have been this week – from Manchester to London – I have met people giving it five star reviews. One patient said it was ‘fantastic.’  Another person described it as ‘brilliant.’

Here you can watch a new NIHR CRN video in which public contributors talk about the course and what they liked about it.

And the great thing is that if, like me, you missed it first time round you can now register for the next course beginning on 6th June.  Somehow it feels appropriate to be opening a new

I’m off to register and I hope you will to.

 

The small things in life can tell us much about how the world is changing. Whether it’s commuters carrying bottles of water. Or the papers left on trains at the end of a journey.

What might such tell-tale signs of cultural change be, when it comes to public involvement? Is it the fact that public involvement now appears higher up on a meeting agenda? Or that the ‘patient’ speaker takes the platform before lunch and not after it?

I like to think that one of them is the extent to which public involvement is now becoming the subject of ‘scientific posters;’ deservedly so.

Here’s a great one produced by Bournemouth University Clinical Research Unit. It shows how public involvement influenced and changed the design and delivery of a research project in osteoarthritis.

Bristol Poster

I like the clear layout, its visual nature, the good mix of narrative and graphics, interspersed with patient quotes. It is also honest about what went well and what was more challenging – as someone said to me recently, it is just as valuable to share bad practice as it is to spread good practice.  All in all, a good learning tool for others.

You can read the accompanying paper – entitled ‘More than just ticking the box’ – for this study on ‘Research Engagement and Involvement’ here.

My thanks and congratulations to Helen Allen and Lisa Gale-Andrew  and the team at the  innovative Bournemouth University Clinical Research Unit The Unit even has a rather cool photo competition you can vote in.

The good thing about these posters is that they are beginning to infiltrate scientific conferences and elsewhere – truly getting the message out and across.

There’s nothing wrong with being a poster child.

 

It’s one of the hardest things they will have to do.  It is physically and mentally draining.  For many it will feel a lonely place.  The atmosphere will be unlike anything they have ever experienced before. Some will feel as if they are in a state of suspended animation. Others will feel as if they have leapt off a cliff into the unknown. One thing is for sure: the world will never look the same again. And there is work to do, more often than not in the shadows.

Yes, today, tomorrow and for ever after, patients will be stepping into the unknown by contributing to research for the first time. As a volunteer on a clinical trial. By joining an advisory group to help researchers design their experiment.  By reading research proposals…

Each will be spacewalking in their own way.

This week we learnt a bit more from NIHR CRN about how cancer patients feel about taking part in research. They want to benefit from new treatments. But they would also like more information about what it is they are testing. They also think they should get to hear about the results.

We learnt from healthtalkonline that for researchers public involvement can also feel like stepping into the unknown.  Those who have done it, encourage their colleagues to learn from those who have, that they should not feel alone.  Many talk about the motivation gained from working with those who will ultimately benefit from their work.

We also heard how industry and patients – for such a long time on different planets – may be beginning to occupy the same orbit if not come together.  A EUPATI paper published in BMJ Open showed that lack of knowledge of one another is a barrier to closer collaboration and partnership.  For many companies, public involvement does not land well with them because it feels too nebulous a concept.

study of public involvement in primary care published in ‘Research Engagement and Involvement’ highlighted how the sustainability of public involvement was predicated on ‘organizational commitment and leadership, adequate resourcing and dedicated support infrastructure.’  Ground controllers to note.

Finally and fittingly, it seemed only right to mention this absorbing piece from Forbes magazine about David Bowie’s connections with science and medicine.

Well done Tim – you will have earned your rest this weekend.

To patients and the public everywhere who are stepping outside the capsule next week – and perhaps for the first time – good luck!

 

 

 

 

 

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