NHS research

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 hope you have had a good Easter weekend.

There have been three health research stories in the last week that have caught my attention.  Each story is significant in its own right.  But they also share a common theme around the importance of public participation in research.

First up is the research published by King’s College London in the American Journal of Psychiatry looking at the long-term effects of childhood bullying,  It uses data from the British National Child Development Study  funded by the Economic and Social Research Council (ESRC) to show that the detrimental effects of bullying last well into middle age.  The participants in the study are 17000+ individuals who were born in one week in 1958 and have been followed over time.

I noted that someone posted a comment on a news site saying ‘why the research, isn’t it obvious?’  Maybe.

But as someone whose adult life has been coloured by what happened all those years ago at secondary school, I am delighted that they have opened up the discussion about this important issue using such strong evidence.  Also, to see so many voices comment on the need to step up preventative work in our schools, communities and online.

It proves the importance of this sort of birth cohort study to understanding more about health and well-being and how it changes over the decades.  The point yet to prove in this case is how to turn such evidence into practical interventions.  Anyway, call it bias, but I happen to think it deserves billing over my next chosen story.

This is the news that Cancer Research UK, Astra Zeneca, Pfizer are moving to the next phase of their Stratified Medicines Programme started in 2011 which involves screening all lung cancer patients for genetic markers to determine which of as many as 14 different new drugs might help. It’s called the National Lung Matrix Trial in what sounds like a Hollywood blockbuster.

This is far-removed from how pharma companies used to work; searching for blockbuster drugs in the manner of someone looking for the Holy Grail.  The partners are looking to test sharper, more precise instruments.  The trials are more complex and often involve fewer participants.  The collaboration is wider and more collegiate.  Where it has a point to prove is in the extent to which the NHS is fit-for-purpose to make this sort of trial work not just in cancer but in other diseases too.

That’s also the point of the third story I wanted to highlight.  Every year, ahead of its annual dinner, the Association of British Pharmaceutical Industries (ABPI) publishes some sort of (frankly unreadable) report about what it believes is the dismal state of UK research.  To be fair, its report this year – ‘Mind the Gap’ – about the state of readiness in the UK to develop ‘personalised medicines’ is a bit more interesting and balanced than usual.

But why do I sense some sort of whispered, almost pitying voice reading the words when it comes to the sections noting the on-going difficulties in recruiting people to clinical trials.  But also the complete absence of thought or consideration to patients and the public as possible partners in devising solutions, not least by involving them in research design and delivery.  As had been shown time and again across our clinical research networks.  It’s the perennial blind-spot for industry.

They have much still to prove.

 

 

 

 

Promoting Clinical Research Activities and Opportunities Locally – From OK to Ask to Research Changed my Life

Mark Terry, Research Office, Royal Brompton & Harefield NHS Foundation Trust (m.terry@rbht.nhs.uk)

2013 has been notable for the strong momentum provided by National Institute for Health Research (NIHR) to NHS Trusts in our efforts to raise awareness of research activities to the public, and to promote research opportunities to patients. At Royal Brompton & Harefield NHS Foundation Trust (RB&HFT) we have utilised this national focus on awareness and engagement, to actively promote patient/public involvement in the design of high quality research but also engagement with our research portfolio and wider opportunities available.

RB&HFT is a leading specialist centre for heart and lung research, with an international reputation for cutting-edge research and an identity which positions clinical research as integral to the core mission of the Trust. It should have come as a surprise that, following a local replication of the NIHR mystery shopper exercise , we faired only marginally better than the (very poor) national average for the availability of useful research information. However, prior to these results, it was recognised that we could do much more, and as a result of the NIHR spotlight, a Research Awareness Working Group (RAWG) was established to deliver an initial set of priority actions, followed by the development of sustainable, long-terms plans to ensure that patients/public are empowered with greater access to improved research information. As the group was getting going, NIHR launched the “OK to ask about clinical research” campaign, which focussed our attention upon ensuring that, should a patient or a member of the public feel empowered to ask, they would receive a structured, positive response every single time.

As such, RAWG identified that patient/public facing promotional materials would be required, and should be placed in high visibility areas of the hospital buildings, a staff training needs analysis would be needed to identify which staff groups (clinical and non-clinical) patients and the public pose questions about research to, and a wholesale revamp of the research pages on the corporate website and staff intranet would be needed to act as a current, accessible information source.

We have now implemented an initial action plan and are confident that patients/public will now be able to easily access useful information. Posters with the tagline “today’s research is tomorrow’s care” are present across the hospital buildings promoting our revised webpages and email and telephone contact details of who to discuss research activities and opportunities with, in addition to NIHR leaflets being available in all outpatients waiting rooms, reception areas and PALS. A research sign posting guide was also developed for staff use, outlining the top five places to whom an enquirer should be directed to for more information. This has been used as the basis for short training sessions with outpatient staff, receptionists, PALS officers and switchboard operators. It has also been printed and attached to all staff payslips to ensure blanket coverage, and inserted into Trust corporate inductions packs for new starters. The Research Nurse Forum members have been enlisted to further encourage use of the guide on the wards, and the junior doctor handbook amended to include the guide and emphasise the importance of research and the rights of patients to be given information about research opportunities available to them.

The crowning jewel of these efforts is the revised web pages, which direct visitors according to their needs (patients/public, researchers, and life science industry representatives). These pages contain a vast amount of information in a user-friendly and easily navigated format. All research studies currently open to recruitment are listed along with brief details and contact information. Increased appropriate participation in our research portfolio may result from these listings, but primarily this resource is acting as a unique and vital source of information for patients/public, and staff alike. Internally, a desk-top icon has been placed on every Trust computer (advertised through a research screensaver and email blast out) to enable staff to quickly identify whether the Trust does indeed have research opportunities that are potentially relevant to a particular patient.

We have now wound RAWG down, in favour of a new Research Information Group (RIG), aiming to capitalise on work already undertaken and to co-ordinate ongoing support to promote and raise awareness of research in the long-term. We aim to achieve this through regular updates of live initiatives, a more pro-active approach to publicising research successes and achievements as well as the development of benchmarks additional to the repeat of the local mystery shopper exercise to enable us to measure the impact of these initiatives. Which links in nicely with the new NIHR campaign: “Research changed my life”

This evening I have been reading a fascinating report about women with ovarian cancer and their access to clinical trials.

Last week, Target Ovarian Cancer published the results of their 2012 Pathfinder Study.  It is an excellent piece of work.  What I like about it is that it digs around issues to do with choice and access; both from a woman’s perspective and that of a clinician.  It’s not just about whether they want to take part in a trial or not. Thank goodness.

So, yes, we learn that 9 out of 10 women would go on a clinical trial if asked.  But, interestingly, only 3 out of 10 have been asked to take part in one compared to 4 out of 10 when the Pathfinder Study was last published in 2009.   Two thirds of those women who were offered the chance to take part in a trial did so, compared to just over half three years ago; a sign of increasing willingness among patients to take part in research.

We also learn that many would be happy to go to another hospital to take part in a trial and that most felt they received the right information to help them make a decision about taking part.

I am not surprised that personal motivation and altruism feature above possible treatment benefits in people’s reasons for taking part.  Nor that some women were put off by the possible extra strain on their lives.  However, I wonder if this might be a good focus for researchers to consider in terms of whether the design and methodology works in the interests of people’s participation – something that obviously public involvement can help with.

The story from the clinicians who were surveyed is that most seem to work in centres where clinical trials happen and the majority are involved in some way.  However, there is a general view that bureaucracy (45%), lack of time to recruit patients (38%) and a lack of trials (35%) is hindering progress.  Look further behind these results and there seems to be a strong, overall message around capability and capacity (the need for more research nurses, administrators) but perhaps a hint that people are not switching onto existing sources of help.  For instance, about a quarter say it is not easy to keep up-to-date with trials but only 9% are aware of Target’s ovarian cancer trial database.

Here’s what I hope having read the study:

– The study gives some really valuable insights into a range of choice and access issues so I hope that Target is now going to work with clinicians and others to think about how these can be improved.

– The Government recently launched local pilots of the ovarian cancer ‘Be Clear on Cancer’  awareness campaign.  Since the study found that women in the late stages of ovarian cancer are more likely to be offered the chance to take part in a trial, I wonder if some thought needs to be given to how to make women aware of clinical trials much sooner after diagnosis?

When you read studies such as this you can’t help but ask: where are the others?  If many charities were to do the same, we would be better able to build up an overall picture on choice and access, not to mention more condition-specific information.  And this, in turn, would help us change clinical practice so that more people had the chance to take part in research.

On the other hand you could continue to award thousands of pounds to researchers to keep hammering away at that molecule for a further three years.  Your choice.  I’m just not convinced it’s always the right choice for patients.

Recently I decided to ‘Follow’ as many of the NHS organisations (Trusts, CCGs etc) as I could find on Twitter.

The main reason was that as we ratchet up what we do around the patient access to research agenda in the New Year, I thought it would be good to begin to make connections on social media. What I hadn’t quite expected was that being able to see their twitter feeds has provided a fascinating insight into NHS activity. Better still that some would contact me with some brilliant examples of what they are doing in research.

Cumbria Partnership NHS Foundation Trust is one such example. They have a great research page. They also have an excellent YouTube video about the importance of research to the Trust with some excellent messages for patients and NHS staff.

Always happy to post similar examples. And I know Cumbria Partnership are interested to hear how other Trusts are using social media in an NHS context.

Don’t forget that NIHR CRN CC has a project up and running to support NHS Trust link-up and share good practice on partnering patients in improving access to NHS research. The web pages are being constructed as we speak. And yes, I shot this video at home. The occasional wisp of smoke outside the window is from my neighbour’s boiler flue (in case you were wondering).

I am prone to beating up our Royal Colleges for one reason or another.  But, over the last few years, I have grown to admire and respect the work of one of their number in particular – the Royal College of Paediatrics and Child Health (RCPCH).

Yesterday, RCPCH launched a new report entitled ‘Turning the Tide: Harnessing the Power of Child Health Research’ which is part progress report and part agenda for change.  The College’s campaign will aim to:

  • Debunk the myths surrounding clinical trials – and push for the introduction of a system of ‘opting out’ of  studies designed to reduce uncertainties in treatments, rather than ‘opting in’
  • Bring organisations together in a UK “Children’s Research Collaboration” to optimise use of funding for research and raise awareness of the need to strengthen children’s involvement
  • Improve education, research training, and guidance for paediatricians: with the RCPCH pledging to improve research training for all paediatricians  and clear routes into research careers
  • Strengthen the infrastructure for children’s biomedical research in the UK by supporting the establishment of a children’s trials network for non-medicines as well as medicines studies, and children’s health sciences networks to share resources, and promote cross-institutional collaboration between paediatricians, adult physicians, and non-clinical scientists researching the early life origins of adult diseases

There’s a very powerful section in the report about what the NHS should be doing which you could read across many, if not all, other conditions.

Two additional comments.  The idea of a UK Children’s Research Collaboration (UKCRC! funnily enough – see yesterday’s blog) is a good one.  Quite apart from the greater co-ordination of efforts that would result, precedent suggests it will also help amplify the message (one of the points Richard Smith noted in his BMJ blog today about charities needing to work together more).  The arguments in favour are given further force this afternoon by the news that donations to medical research charities are now falling (see AMRC blog).  Quite simply it is about efficiencies of scale.

I’m also delighted that RCPCH and its partners are going ahead with the idea of a ‘children’s charter.’  The College seem to have developed a strong public involvement model of working and I went to one of their meetings with young people and parents a few months ago as part of the ‘Turning the Tide’ preparation work.  This was an idea that came out of that meeting and I am pleased it has gained credence with the report authors including Neena Modi, Vice-President at the College.  In setting out children’s rights and expectations when it comes to research I am sure we would all wish to support and applaud its development.