How your NHS Trust works in mysterious ways when it comes to clinical research

Today the NIHR Clinical Research Network Co-ordinating Centre (NIHR CRN CC) has published the results of a ‘mystery shopper’ exercise it conducted last year to investigate how well NHS Trusts provide information about clinical research.  You may have seen a piece in last Sunday’s Observer which trailed this work and you may hear about it on your local radio station during today.

The results which can be found here will not surprise you, with most NHS Trusts not providing patients or signposting them appropriately.  The sample is small but, based on my own experience and that of colleagues, I think the findings are likely to be indicative of the picture across the country.  As a first round, this ‘mystery shopper’ exercise has been an innovative exercise and I was delighted to be involved in a small way at its inception.  It sets a benchmark which needs to be regularly tested and I would argue that it would now be interesting to see whether there is any correlation between those Trusts that are high-performing in terms of recruitment to clinical trials and the availability and quality of information.

In some senses the specific results – pity the poor hospital receptionist – are less important than the overall impression being given to patients about whether an NHS organisation is open or closed for doing clinical research.  I used to work with a CEO who used to say that you can tell the culture of an organisation just by walking through its front doors and gauging what he used to call ‘the smell of the place.’  In essence I think that’s what we are talking about today.

What next?  Well, as you will see, the report says that a resource pack will be developed to help NHS Trusts develop their information on research.  Whatever we do it is important that it is supportive and encouraging rather than admonishing.  Life for our NHS staff is hard enough as it is and we need to keep it simple.  I am rapidly coming to the view as I develop my programme on patient access that we need to embed patient champions in every NHS Trust to promote a more conducive culture – a little like embedded reporters in the army.  The NIHR CRN CC Involvement4Access project which I have mentioned several times before begins to take us on that road.    We also need to really support and help our hospital and GP surgery staff to understand why research is important and why it is important patients should feel comfortable asking about it.  It is people who drive culture.



Research in the NHS: I couldn’t put it better than Cumbria Partnership NHS Trust

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).

Clinical trials activity report for England highlights progress but much work still to be done

The National Institute for Health Research (NIHR) CRN CC has today published its clinical research activity report for the final quarter of 2011/12.  Some of the data and a good summary of what they mean is also available on The Guardian website.

Last year was the first that this sort of information was made widely available.  So importantly, from a public perspective, people can now look at how their NHS Trust has improved upon what it did the previous year.

The overall picture is positive.  In addition, there are some very good stories within the report about the progress being made in specific parts of the system.  I am particularly pleased to see the increase in research activity across primary care – a significant foothold that we must make sure is built upon as the NHS changes take effect.

Patient recruitment to research was above the NIHR CRN CC target, if a little lower than last year.  It simply emphasises the fact that we have much to do to ensure patients are given the opportunity to take part in an appropriate trial.  More importantly, that they know they have the right to ask.  I shall say more about this next week.  The fact that the NIHR CRN CC report slices up the data by NHR Trust and type of Trust also means we can be quite strategic in our thinking about where this push is needed most.

Yesterday I chaired the second meeting of a working group – hosted by NIHR CRN CC – that will be bringing together a cluster of public involvement colleagues in NHS Trusts across the country to develop tools and information for Trusts to improve access to research for trials.  You heard it here first.

We are on the right path.

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.


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.”



Pro-research NHS Trusts talk in-depth about their challenges and opportunities

After my little rant yesterday about health research culture and public involvement, it seems only appropriate to share with you the following in the interests of journalistic balance.

The latest NIHR Clinical Research Network (CRN) newsletter, aptly called ‘News from the Network,’ is a special edition featuring in-depth features on the NHS Trusts who were shortlisted for the Health Service Journal (HSJ) research culture award last year.  You can also get it via the NIHR website.

Some really good stories in here.  I haven’t read them closely enough with my ‘patient’ hat on but I liked the quote from Portsmouth that they believe every patient who enters the hospital should have the opportunity to join a clinical trial.  Hear hear.

The inner back page is interesting in that it shows the not inconsiderable number of NHS Trusts who entered for the award.  But I still stand by my words from yesterday.

Looks a thoroughly good read that will sit neatly next to our household’s weekly deliveries of ‘Grazia,’ ‘Match of the Day,’ ‘Dr Who’ and ‘The Lancet.’  Yes, it’s my eleven year old son who reads the ‘Lancet.’  I’ll let you guess which of the other ones is my publication of choice.

How’s your NHS Trust doing in the research league tables? Is Leeds the Man City of NHS Research? Does Bridgewater deserve the hairdrier treatment?

So NIHR CRN CC/The Guardian have today published a league table of how each NHS Trust is performing in research as defined by the number of research studies and the number of patients taking part.  I believe this is the first time such a table has been compiled and a thoroughly good thing it is too.

There’s also an article from Pharma Times here that gives a bit more insight.  Jonathan Sheffield, Chief Exec of NIHR CRN CC, is quoted and I must say things have really started to happen since he came on board.

Attention will focus on the top and bottom of the league table I suspect. But it is interesting the leanness of clinical trial activity across large swathes of the country.  Pushing this activity upwards has got to be the goal.  So get writing to the NHS Trust Chief Exec.

In defence of the clinical trial patient: a health research ombudsman?

Over a half a million members of the British public took part in clinical trials through the NIHR Clinical Trials Research Networks in 2010, a 24% increase on the year before.  Those are the Government’s figures, not mine.

Last week’s ‘life sciences’ announcement included a range of measures to increase patient recruitment to trials.  These include reforms of the rules governing the use of patient data for research purposes as well as other initiatives such as the next phase of development for the UK Clinical Trials Gateway. 

Thus far the hoped for increase in clinical trial participation has been viewed only from the research standpoint but with a glance towards distant outcomes of patient benefit as a raison d’etre.  But we also need to turn our mind to how we provide appropriate help and support to these growing numbers of patients.  It is often said that people on trials receive better care and show better outcomes than if they were not?  The evidence is better for the former than the latter but still not that robust.

Talking to patients will reveal many positives in terms of their experience of being on a trial.  But concerns and issues do arise, such as the lack of follow-up or feedback after a trial ends.  Sometimes things will go wrong; the incident at Northwick Park several years ago being being an example.  Looking back on that report now, it is interesting to note that not one of the recommendations really relates to the patients themselves and the learnings we might take from it.

To whom and how a patient can raise concerns is a difficult one to answer succintly and simply.  To the clinican, the clinical trial nurse, the NHS?  All of the above, most surely but perhaps it is not enough particularly if things go seriously wrong.

There then seems to be a bewildering array of organisations who you could turn to.  Some of these might have an interest in your concern but have no license to act or ability to investigate from a patient perspective.  Those that you would think would be interested – such as the National Patient Safety Agency (NPSA) – will signpost you elsewhere.  Looking to the future the new Health Research Authority (HRA) will have a duty to ‘promote and protect’ the public interest but  it’s capacity and capability to fulfil this, will only reach as far as systems and governance I feel.

I wonder whether there is a case for an independent Health Research Ombudsman to investigate matters when things go wrong from a patient perspective, or whether this should be included as part of the brief of the current Health Ombudsman?  The same rules might apply in that one would have to show that you had exhausted other routes or that the complaint had been handled unsatsifactorily.  But it could be an important route to recourse where currently there seems none.  It would also help to improve the evidence base around the patient experience of clinical trials – the Health Ombudsman’s annual report is often quite influential.

Given that the changes being mutedto make everyone a ‘research patient’ require amendment to the NHS Constitution, now might be an opportune time to consider whether it would be in keeping with this change to have a ‘supreme court’ type body of the sort above to protect people’s rights.  No, to ensure that people are receiving the very best care.



Promoting clinical trial participation

This coming week I am speaking at The Prostate Cancer Charity’s national conference. 20 minutes on public engagement including questions and answers.

My first call to action to the audience is likely to be about encouraging patient participation in clinical trials.

Compared to five or even one year ago there now seems a great deal more being done on this front. About time. Some recent examples I have stumbled upon are as follows:

– I was delighted to see this appear on the National Institute for Health Research Clinical Research Network Co-ordinating Centre (NIHR CRN CC) website on Friday: In the first of four videos stroke patient, Brin Helliwell, talks about his motivation to become involved in clinical research.

These first-person pieces are extraordinary powerful in encouraging others to come forward. Only today I was reading an equally impactful piece going in the next Ovarian Cancer Action newsletter by a woman who talks positively about her experience.

– Nursing reports that the Diabetes Research Network is on a recruitment drive to increase participation rates which are about 1% of the diabetes population compared to 30% for cancer.

-I also found a piece about the Greater Manchester Diabetes Research Network teaming up with a firm called Cube3 to run a campaign entitled ‘Help Diabetes.’

All this in the week that NIHR also announced it’s new translational partnerships.

Get recruiting! A clinical trial needs you!

PS Will post links to some of the above when next atba proper PC.

‘Scroll down’ for clinical trials

To begin with, here’s more on that Pfizer story about use of mobile phone technology etc in clinical trials. It seems to have piqued an interest among many of you anyway.

Also on the subject of clinical trials, I was rather perplexed by this story running out of the NHS Confederation this morning. I’m delighted that the NHS Confederation are at last exercising their PR might in the name of research – it must have something to do with Mike Farrer’s move there as CEO. As you may know, he was previously the chief executive at the North West Strategic Health Authority which led the hallowed ‘NW Exemplar work on clinical trials.

The overall message of the piece about regulation standing in the way of clinical trials is also good. But I am sure the data/evidence they have put forward to support it, passed its sell-by-date a long time ago. If you look at the latest metrics for trials put out by the NIHR Clinical Research Network (CRN) Co-ordinating Centre, one gets an alternative and more up-to-date picture of an improving situation.

Much work is still to be done though.

The really striking bit in yesterday’s MORI survey by the Association of Medical Research Charities (AMRC) was that showing the degree to which patients would be willing to assist in research by participating in trials (72%) or letting researchers access their confidential records (80%). But you have to scroll down the page to see these results.

A bit like we expect patients to ask their GPs to do if they want to turn their willingness to take part in research into action. I am sure I saw an academic paper a few weeks ago which heralded the 39% or equivalent GP practices that were active in recruiting patients for trials in Eastern England. All I could think of was…what about those people living in the catchment areas of the other 61%. Perhaps their GPs still use scrolls instead of prescriptions.

So grist to our mill in making sure the Health and Social Care Bill supports the things that are already being done by NIHR and others to change this.

More NHS patients participating in UK clinical trials than ever before

A piece of good news with which to begin the New Year.  PharmaTimes is reporting that the number of patients participating in clinical trials jumped by 67% last year to over half a million (compared to over 300,000 in 2009).

The new CEO of the National Institute for Health Research Clinical Research Network Co-ordinating Centre (NIHR CRN CC) – which provides the machinery for how clinical trials are delivered in the UK, Jonathan Sheffield is quoted as pointing to the involvement of the wider NHS (not just teaching hospitals) and increased public awareness as key factors behing the increase. 

A rather interesting piece of news I thought given a) today’s news about the ‘polypill’ trial going ahead, b) the impending Academy of Medical Sciences report on medical research regulation and, on a more personal note, c)  that these first few months of the year shall see me busy working with patients and colleagues in NIHR CRN CC to ensure an even better plan for the implementation of patient and public involvement across the UK’s clinical research networks. 

Jonathan alludes to this work in his interview and it is an area where medical research charities have had, and will continue to play, an important role  – assisting in patient recruitment to trials, raising awareness among patient constituencies of the importance of research, as well as funding such trials themselves of course.  As NIHR figures showed last year, 37% of all clinical studies on their portfolio are  funded by charities. 

Hopefully the Academy’s forthcoming report will show the way to how we might build on this success.