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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! :)
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.
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.