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I’m always very chuffed when people ask for a copy of my presentations after a talk. Usually I am quite good at emailing them to people or asking the organisers to send them round.
Anyway, I have done a lot of meetings lately and thought I would post here copies of my slides from the last three in Leicester, Leeds and Nottingham. A lot of the slides are common to all but there’s one or two differences given the slightly different topics. Thank you for listening, reading. These can also be found on my slideshare.net site.
Breakfast workshop at Health Services Research Network Conference: 18 June 2013: ‘Why public involvement is the most important meal of the day?’
Talk to Local Clinical Research Network (LCRN) meeting in Leicester: 19 June 2013: ‘Making it real: patients and public improving health research’
‘Only connect: working together to improve research:’ speech to patients, public, service users, carers and staff from the NIHR clinical research networks, Leeds, 26th June 2013
Given my post yesterday I am delighted to congratulate Tees, Esk and Wear Valleys NHS Foundation Trust on winning the Health Service Journal’s (HSJ) first ever research culture award last night. The full list of winners and highly commendeds is as follows:
And here is a rather lovely bit from the NIHR website.
Let them be exemplars to others! ∞
You cluster if you want to…the single most important translational gap in UK clinical research today
A colleague of mine put up two slides at a meeting today which neatly encapsulated for me the key strategic – perhaps translational gap – in uk clinical research right now.
On the demand side, the first showed the key results from the Association of Medical Research Charities (AMRC) commissioned MORI poll of public attitudes to health research earlier this year. I quote:
“97% of the public believe that it’s important the NHS should support research into new treatments according to an Ipsos MORI poll published on Thursday 9 June. The poll, commissioned by the Association of Medical Research Charities (AMRC), Breast Cancer Campaign and the British Heart Foundation also shows that 92% of people believe it’s important for the NHS to support such research funded by charities.”
Then, on the supply side, these are three of the results from a recent Health Service Journal (HSJ) article
- 38% of clinical research professionals agreed that clinical research is part of their Trust’s planning
– 39% agreed that clinical research has a high priority in their NHS organisation’s strategy
– 61% agreed that clinical research is peripheral and driven by individuals in their organisation.
In essence what this means is that while the public appetite for health research is there, and good systems are now in place for making research happen, we are still depending on enthusiasts to get if off the ground in NHS organisations.
When the Government releases its Life Sciences package on 5th December, I’ll be judging it by how far it might go to closing this gap. You can have as many science clusters as you like but, as one famous political leader said: ‘you cluster if you want to, i’d rather spread the word instead.’
Or something like that.
We are a nation that no longer knows when to put its rubbish bins out.
So I reflected, as I dragged our two overflowing wheelie bins back to their usual place. To be fair to Bromley Council, it’s not that they fail to pick-up our rubbish; just that no one can quite predict what sort of rubbish they are going to collect in any given week.
I won’t bore you with the details. Suffice to say that some months ago they changed the system of waste collection here – successfully ‘piloted’ with local residents I should add – so that various items would be picked-up on alternate weeks. Well, for the life of me, I and my neighbours have got it wrong at least 40% of the time. I wouldn’t mind that much but after hours toiling over separating tetra packs from the New Scientist it does get a bit irritating to see the bin men and women dump it all together in the back of a dustcart. As my mother would say – and she is usually right about most things: ‘it all goes down one way.’ But I do wonder if I am part of some sort of rather wicked observational study.
Such episodes in life do however serve as useful metaphors for larger trends at work. In this case, perhaps, it is the passing of what was once certain, fixed, reliable. Now I just sound like John Major don’t I?
Anyhow, enter stage centre-right, the NHS. September is upon us after another crummy August and our politicos have quickly rejoined battle over the health service reforms. The Sunday Times front page from yesterday suggesting that overseas companies are being primed to run hospitals (or should that be the other way round) left me unsettled to say the least. Notwithstanding the so-called ‘Listening Exercise’ prior to the summer, it really does feel as if the tectonic plates are shifting beneath the NHS and fast.
The BBC Online has a good overview of where the battle lines have been draw if you wish to look deeper and I wish that I had been able to attend this evening’s Stempra briefing and discussion on the Bill – perhaps someone will post a comment giving us a sense of what happened.
But I was struck by the passage in the BBC piece about the anticipated forensic scrutiny of the legislation when it gets to the House of Lords. Heavens knows it needs it. When I was a little closer to these things than I am now it was well-known that Peers were getting together regularly to examine and prise apart the Bill in preparation for its stages there.
This is the thing. If you are into your pure politics then I suspect you will be attracted by the likely rough and tumble during the party conference season and in the House of Commons come October. If, however, you are looking to throw your weight behind the forces that might ensure the reforms are changed for the better then I encourage you to assist our Peers in every way you can with good evidence and good briefing.
Otherwise, it will not be that the NHS fails to treat people in the future, rather that none of us will be able to predict which patients it will treat in any given week in any given part of the country.
PS: Apologies that the links are to ‘home pages’ but I can’t seem to use anything other than the WordPress recommended links on this computer.
The summer break has clearly done the Secretary of State for Health, Andrew Lansley, a world of good.
From beating a lone path as the libertarian Claudius in the face of a centralised health service, he has resurfaced this week as the man for all seasons to launch a competition for the best ideas for new mobile phone health applications. The public can also name their favourite health app. See also The Guardian today.
Good for him that’s what I say and what a good idea. The only criticism I have is that there is no money being put towards developing the winning ideas, no doubt because there’s none left after the NHS IT fiascos of late.
From The Guardian also comes an article in which the CEO of Cancer Research UK, Harpal KUmar, talks about this being a golden age for cancer research, as a presage to their next great push on clinical trials being launched next week.
One hopes that the brightest minds in the research community are putting the threads of these two stories together in potential entries to the Department of Health competition, apps that could be used as or as part of a clinical trial or, for instance, that patients could use to find out about trials – a sort of ‘clinical trials near me’ app. This certainly seems to be what is happening in the US as I have blogged before.
Being a mere consumer of (too) many apps and not a mobile phone app designer I can only vouch for the ‘simple is best’ view as to what works. So my favourite health app at the moment is ‘Stress Check’ designed by AIIR Consulting – the free version of which is basically a quick questionnaire which gives you a stress score and also allows you to track your stress levels over time.
Not wishing to incur the wrath of Ben Goldacre, the blurb for the app says it uses a research-based assessment tool but I’ve not checked this out to be honest.
I am more pleased to be honest that my stress score seems to have gone down from 75 to 63 in a month and not all because of my teepee holiday in Cornwall (actually I suspect it would have probably gone down more had I been on a holiday where everything was fitted i.e. bathroom, kitchen, children etc).
No, it may not have given me a deeper understanding of some of the causes of my stress but it has helped me to change my behaviour by a) engaging me b) giving me some stress management tips and c) by giving me a sense of progress. Quite simply, in helping me to focus on this potentially harmful aspect to my life it has done its job. That’s all I can say.
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.
As a self-confessed member of the worried well, I ask that people think carefully before they throw strange words at me. Particularly on the day of a regular visit to my ‘prescription-happy’ doctor.
A colleague asked me this morning how my interregnum was going. It sent me into a momentary panic. Is it treatable I wondered anxiously? Then I asked myself if I’d been asleep longer than I thought during which time there had been an overnight interregnum akin to other moments in history such as the Spanish Inquisition.
Finally I realised she was referring to my being between two jobs – I start at Ovarian Cancer Action on Monday. Phew.
The final days of the Department of Health’s listening exercise have seen a last minute flurry of submissions. I read on BBC News Online that over 15,000 comments have been made and 750 letters received by some poor official who only three months ago had an empty in-tray. The Association of Medical Research Charities’ (AMRC) submission on behalf of the charity sector can be found here – and very good it is too. Elsewhere the King’s Fund has kept up its usual pace of incisive criticism with a report on accountability in the proposed new NHS set-up.
Indeed, accountability is a theme that has resonated strongly in these final days. Mark Walport, Director of the Wellcome Trust, referred to it in his Times article yesterday. The Daily Telegraph reports this morning that the inclusion of patients and the public in the management boards overseeing GP consortia, is likely to be one of the key recommendations that the NHS Future Forum chaired by Steve Field will make when it reports to the Cabinet shortly.
That has to be right. There seems to be an inherent contradiction between Big Society politics and the NHS reforms if the public are not to be given greater access and opportunity to influence and shape how health care is delivered in their neighbourhood. Of course, that’s always assuming you believe in the Big Society mantra.
But I do understand the difficulties for the Government in getting the composition of these bodies right given the equally understandable clamour from all and sundry to be represented. I see the nurses are the latest to make their pitch today. However, patient and public representation should be one of those ‘red lines’ for charities and the voluntary sector on which we should not give way in the months ahead.
If you are planning a holiday around developments with the NHS reforms then you may wish to take a look at the Financial Times article today which speculates about the timetable from here onwards.
Not long now before we’ll find out how much of its original plans the Government decides to alter or whether it is intent on flying in the face of its own self-imposed interregnum.
Footnote: By the way, I heard an interesting bit of ‘Whitehall’ news last week which is that the Office for the Strategic Co-ordination for Health Research (OSCHR) has moved offices from its HM Treasury base (its home for the last few years) and is now located in the Department of Health. Happy to be corrected if I am wrong.