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….despite the temptation.
Summer means many things for me. One of them is keeping track of the football transfers. Here’s hoping that the Eagles do manage to persuade Ronaldo to South London!
The comments that managers make about players never cease to amuse me. One of the most common goes something along the lines of: ‘He’s a good lad that Denegri, he just needs an occasional arm around the shoulder.’ During the playing season this is usually before or after they have been sent off for some professional foul.
I have not decided whether it is a professional foul worthy of a yellow or red card. But the perennial resistance of clinicians to take part in the matching of patients to clinical research seems worthy of a caution at least don’t you think? It is disappointing to see it feature yet again in the feedback we have had to the ‘OK to Ask’ campaign that NIHR ran for International Clinical Trials Day (ICTD) in May. You will recall that the aim of the campaign was to highlight to patients that they can and should be asking doctors about opportunities to take part in research.
A summary report on the campaign can be found here. As proof of principle that we can run a co-ordinated campaign about research across both NIHR and the NHS, and in support of a simple message aimed primarily at patients, I am delighted with the outcome. The degree of involvement among NHS Trusts in getting the message across to the public – with over 150 events listed – was very positive indeed. It has also helped promote research awareness among staff within hospitals as the results from our follow-up survey show:
- 77% of people rated the overall campaign as “good” or “excellent”
- 67% of people said that campaign engagement within their Trust was either “good” or “excellent”
- 71% rated how well the campaign was received by patients as either “good” or “excellent”
- 80% said that the OK to ask campaign helped them to deliver some momentum for research awareness within their Trust, Network or organisation
- 98% said they would continue to promote the OK to ask message
But it’s clear from the extensive comments fed back to us (not published as part of the summary by the way) that there was some resistance to the campaign among clinicians. Some were concerned about raising false expectations. Others found it was difficult to signpost people appropriately when some of the tools we have such as the UK Clinical Trials Gateway (UKCTG) don’t yet support local interaction. A few thought the message was demeaning. They probably have not been to Pizza Express either.
It wasn’t a show-stopper – 7 out of 10 people said the campaign was good or excellent from a patient perspective versus 5-6 out of 10 saying the same for clinicians. However, it is something we need to consider as we develop ‘Ok to ask’ over few years; your views and thoughts will be welcome as ever. We will also have a greater opportunity to get it right from a clinician standpoint from this point onwards because we will have a longer lead-in time for the campaign itself. This year we turned it round in about 3 months from beginning to end which makes everything a whole lot more difficult. There will also be opportunities to build on the message at both local and national level in the meantime.
It would also be remiss of us not to recognise the wider context here, the difficulties for staff in the current environment when it comes to research. This was astutely identified by the Association of Medical Research Charities (AMRC) in its recently published vision for the NHS. It’s an excellent document. Part of its vision is that: ‘All NHS staff see the importance of research.’ And it lays out a good plan for ensuring that NHS staff are given the tools, support and opportunities to support the research agenda. Getting behind this call and making it happen is what I mean by putting ‘an arm around the shoulder’ I suppose.
That’s not to say that I do not share the frustration and anger people feel over the stubbornness of our professions in general: when it comes to them engaging with research but also in engaging their patients in research. It featured strongly in the Arthritis Research UK strategy meeting on stratified medicine I attended yesterday for instance. And in that arena it could be a real show-stopper.
But we should take hope from, and use, the fact that many clinicians quite clearly did get on board with the campaign as did the Boards and senior staff of many Trusts. This leadership is essential to changing behaviours.
As is the leadership you and many other patient, public, research and other health professional colleagues showed in making ‘Ok to ask’ a success. For that, I thank you most sincerely.
PS: By the way, it is actually true that I need an arm around the shoulder on occasion! :)
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.
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).
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.
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.”
The Academy reports on research regulation…and a reminder of the Guardian’s Q&A about public involvement
The Academy of Medical Sciences (AMS) today published its report of the meeting it held a few months ago, looking at progress with improving the regulatory of environment for medical research. I blogged about being a panellist at the meeting as you may recall. The report’s conclusions are noteworthy for the second bullet point about public and patient involvement which is eyebrow-raisingly strong for the Academy.
The Academy report has a lot to say about patient data issues so just to remind you that the leaflet produced by the UK Clinical Research Collaboration (UKCRC) partners, ‘Your medical records saves lives’ is available if you go here (see last on the publications list on the right-hand side-bar).
It is International Clinical Trials Day on Sunday (20th May) and there’s a short statement from the Chief Medical Officer and Director of R&D at NIHR, Dame Sally Davies, on the National Institute for Health Research (NIHR) website. There’s more information about what clinical trials day is on the NIHR CRN CC website here. I am looking forward to doing a round of radio interviews on Monday morning with a number of patients also taking part. The vision for 2013 is to make the day much more patient driven in every way, but this is a good start I feel.
Also next week – on the 24th May – I shall be taking part in a live Q&A about public and patient involvement on The Guardian’s healthcare network. Details will be forthcoming shortly but at the moment the link in the previous sentence will take you to a short video of me talking a bit about my history in the world of health care. For some reason I look terribly unwell, perhaps it is the beard which I have now got rid of. But I think the words make sense.
I understand Rare Disease UK is close to putting the final touches to its response to the Government’s consultation on a strategy for rare diseases. So, if you haven’t done so yet, let them know what you think.
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.
Returned from half-term leave today thinking that I might write about the latest Care Quality Commission (CQC) patient experience survey.
After a while looking at the results I began to think: is there a good reason why there isn’t a patient ‘out of body experience’ survey conducted and published? It might come closer to the experience of some of the patients I talk too. Not that the survey isn’t important but it’s difficult to see beyond all the figures and find the voices of the people who matter.
Anyway, instead, I thought I would post the link to a new web page called ‘Research People’ - effectively ‘video diaries’ filmed by doctors, nurses, GPs, clinical trial co-ordinators and patients about their involvement in research – produced by the NIHR Clinical Research Network Co-ordinating Centre (NIHR CRN CC).
I have to say I have been really impressed by what NIHR CRN CC have been doing on the communications front in the last few months. It deserves to get a wider audience. Love it.
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.
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 Times.net 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.
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.