National Health Service

1. ‘The dog ate my whole doctor’s surgery.’ Yep, it’s those dastardly GPs again. Ever since the weekend news that many cancers are first diagnosed in A&E we’ve seen the excuses just roll off their collective tongues. So much so you’d think they’d said them before. We’re underfunded, underpaid. stunned by so much change, and very, very, very, very busy. Expect more of the same in response to the Care Quality Commission report this evening. Most definitely DOWN.

2. ‘The NHS is listing.’ So the HSJ published its annual top 100 superheroes in healthcare list today. All puerile nonsense really. The HSJ even hosts a party for them all. Given that the first individual with patient credentials appears at #37 on this year’s list, I suspect the only patients and members of the public at the party will be serving canapés. And we wonder what’s wrong with the NHS. DOWN.

3. ‘Research is the new dating.’ The Health Research Authority (HRA) has announced a consultation on good practice in approaching people to take part in research. Good move I say. Too many ethics committees would rather we recruit people to research using methods similar to MI6 at Oxford or Cambridge in the 50s. More on this later but they are most definitely UP UP UP!

4. ‘Cut-price PPI.’ With the January sales just a few weeks away it’s heartening to hear that the National Cancer Research Institute (NCRI) is keen to make an impression. But cutting the reimbursement of patient and public involvement colleagues from £150 a day to £80 overnight and without consultation is just a little bit crass. Remind me, what does the campaign slogan say: ‘no research happens without participation.’ NCRI is DOWN in my book. Sorry.

5. ‘Results? Don’t worry your little head about that!’ So we learnt this week that 4 out of 5 participants in research would like to be informed about the results of studies they have taken part in. But only 1 in 5 get them. Shame. Research is for life not just for Christmas. But why not take the opportunity of the festive season to sign-up to #AllTrials who are definitely UP.

6. ‘Exeter is the new Bonsai beach of PPI.’ Congrats to PenCLAHRC on what I heard was a fantastic PPI conference a few weeks ago. I say ‘heard’ because I wasn’t invited. Not that I bear a grudge or anything. Now, where’s NIHR’s number…..? UP, I say, UP

7. ‘Researchers like their toys.’ How dare we question the basis and funding for the 6,234th study into whether music and singing in a care home leads to happier residents? Of course it bloody does! Similarly I have yet to fully understand why the ESRC thinks it is a good use of public money to spend £425k to study how children play with Action Man. They could just have called on my house and spent Sunday afternoon with my sons – for the price of a cucumber sandwich or two! The ESRC is DOWN.

8. ‘Dementia wasn’t cured in a summit.’ Let me be clear, the G8 Dementia Summit today is a good thing in my view. But whether we’ve seen Jeremy Hunt march us all up the mountain and then back down again like the Grand Old Duke of York remains to be seen. In the meantime put your trust in the ‘10,000’ and many more people with dementia and their carers who will get us there through their involvement. For that reason, and that reason alone, UP!

9. ‘Think AHSN, think Secret Santa.’ If you had been at the AMRC AGM two weeks ago you’d have thought Christmas had come early in research with the advent of AHSNs. They are going to solve all our problems.

Up and down the country the same encounter is taking place in dark alleys between researchers and policymakers: ‘My mate Nicholson tells me (sniff) you’ve got a problem with your test tubes and stuff. Well, I know just the bloke to help you, works for one of ’em AHSNs. Goes by the name of…’

But let’s get real. With less money and little consistency in approach, working with AHSNs is going to be more like the office secret Santa.  What that means, my hardy patient and public colleagues, is that your particular Secret Santa may have forgotten all about you I am afraid. So, AHSNs are neither UP or DOWN my Christmas chimney. The jury is most surely out.

10. ‘You know who you are.’ The term ‘patient leader’ is being purloined and skewered left right and centre.   Beware management consultants and so-called ‘public engagement experts’ on the make especially. Patient leaders, rise above it I say! We’ve seen it all before. We are all on the UP.

Invitation to contribute to workshops about the Health Research Authority’s  Public Involvement Strategy

The Health Research Authority is running two workshops to give people interested in our strategy an opportunity to discuss it and how we put it into action. We would like these to include researchers and research funders as well as patients and the public and those involved in developing and managing patient and public involvement
The first workshop will be on Monday November 25th 2013 at Friends House, Euston, London and the second on Tuesday November 26th 2013 in Birmingham at De Vere Venues Colmore Gate in the city centre near Snow Hill railway station.
Both workshops will be run from 11.00 to 14.00 (including lunch) and will be limited to around 40 participants.
The workshops will be mainly about how the HRA uses its influence to support public involvement in health research more widely but also include the opportunity to hear about and discuss other aspects of feedback received to date on the strategy.
If you are interested in attending please email us at
We will cover travel and subsistence expenses for members of the public (as defined in Appendix A of our strategy) who attend the workshops. They may also be eligible for a payment for their contribution of £75. Anyone who is in receipt of state benefits should contact us in advance to discuss arrangements to cover both expenses and payment for time.

I am in Alberta, Canada.  I have been invited over to share the UK’s experiences in developing public involvement in research.  As ever, it is the similarities and not the differences between our two experiences that strike you on a visit like this. More about those another time.

My good friend, Derek Stewart, yesterday wrote an excellent blog with his thoughts on what we are trying to achieve through public involvement. He is right. Public involvement, participation, engagement, these are all a means to an end.

I wonder whether our real aspiration should be the development of ‘research active’ communities that lead to a healthier population.  On the 50 minute plane trip from Edmonton to Calgary yesterday I tried to draw/visualise what would define that ‘research active’ community with ‘healthier populations’ in the centre circle:

research active communities

Well, it is a rough sketch and I’m no Tony Hart.  This is what was flying by the window by the way:

Edmonton to Calgary

I very much believe that by community we could just as well be talking about an organisation as a neighbourhood or a patient population.  The term embraces all its citizens as well whether they be patients, carers, the public, researchers, clinicians, etc. etc.  Anyway, in a ‘research active’ community the following features would seem to me to be in the ascendant (this is what I wrote in the smaller, outer circles):

  • Research is visible to its members
  • Research priorities are defined collectively
  • Citizens help shape research design
  • There is learning through the communities’ experience of health and wellbeing
  • Citizens have clear opportunities to participate in research and are encouraged to do so
  • Research is central to the provision of health and social care
  • Its members are working in an equal and respectful partnership
  • Citizens can access and use research evidence as part of their care and treatment
  • Citizens share in the governance of research

Alberta is going through a process of rapid restructuring and re-organisation of research across the province.   It is not dissimilar to what is happening across the 15 local geographies in England where we are seeing Academic Health Science Networks (AHSNs), Collaborations for Applied Health and Research and Care (CLAHRCs), and Local Clinical Research Networks (LCRNS) occupy the same patch.


Their collective mission is to work with their local NHS and other partners to build research and innovation into the way we deliver health and social care of patient benefit.  So, what happens between these new organisations will be more important than what happens within them.  Partnership, integration, connectivity will be the name of the game.

Similarly for public involvement a process of re-purposing within these areas must happen in my view.  We still have much to do to ensure public involvement is improved in research prioritisation, design and delivery.  But we must not become too introvert.  It will be important that we look out of our windows, work with patients, the public and our public involvement colleagues across the way, and build the connections that will grow communities that are active in research and healthier for it.

A small island has appeared off the coast of Pakistan following the tragic earthquake there last week.  The consensus of scientific opinion is that, before long, this island will disappear without trace.  In the meantime it is an interesting curiosity, attracting quite a gaggle of geologists and geographers.

I wonder if that is how INVOLVE was viewed by the science establishment all those years ago when it first came together? Soon to disappear, I mean.

Well, we didn’t. In fact we are now in our seventeenth year. And we are not so small any more. So there!

Last week INVOLVE held its annual members’ symposium, an opportunity to re-group, share and think about the future.  It is always telling what bubbles to the surface on these occasions.  I even sketched a cartoon to help me think about the themes afterwards.

IMG_0079 (2)

‘Integration’ was one of the most commons words used in our discussions over the two days.  No, not the integration of health and social care.* But, the urgency with which patient and public involvement across health research needs to be integrated or connected at the very least; the dangers in terms of waste, duplication and missed opportunities, if they are not.  Public involvement in research consists of many islands dotted across the system.  Some are well-connected.  Others less so.  We must build bridges quickly between those that are not; even if means settling for pontoons rather than suspension bridges.

Changes in the NHS loom large.  We were treated to two excellent presentations about ‘health and wealth’ and also the Academic Health Science Networks (AHSNs).  AHSNs are the new kids on the block with the given task of helping to generate.  But they are ending up with a different job description and less money than was originally hyped up two years.  So be it.  We’ve been there and done it many times as patients and the public.  However, their emphasis on partnership and collaboration plays into our hands nicely if we can just get through that door marked ‘academia – do not disturb.’ And persuade those monsters from the deep to break the waters with some funding.

We are hesitant about the idea of patient leaders and/or patient leadership.  Or rather, we are concerned about the speed with which patient-driven notions of leadership are fast becoming bastardised and commoditised by the NHS in its anxious search for accountability and legitimacy.  Capsizing looks inevitable but not complete submersion if we can get a boson’s line to it fast enough. Should we succeed I think it could sail from port again but stronger just like INVOLVE did all those years ago.

As always there is he frustration that others in the NHS can not see what we can beyond the fog behind our island.  Who knows what the charities are doing hanging on by the anchor chain and abandoning all hope of independent thought.  Roll on the breath of fresh air that walks in the guise of future NHS leaders who truly understand involvement.  They will come I feel sure.

Yes, we talked about language and definitions (c’mon, if we didn’t it would be like Christmas Island without its red crabs).  We agreed that precision in our language can give confidence to others.  That we shall seek to do, while avoiding those pincers of course!

We also talked at length about standards.  What does good quality public involvement look like?  Should we have a Chief Inspector of Patient and Public Involvement who can be CHiPPi with those who fall short? No. of course not.  But we think there might be mileage in us producing some principles and a framework that helps people identify quality in different contexts.  We can not instruct. We can, however, help others make sense of where they stand and surely that is far more empowering, Anyway, watch this space for an excellent paper summarising what we have discovered in terms of standards and values and principles.

I rather enjoyed the truncated session in which we were asked to identify the things we wished we had known before getting involved in public involvement. I said I wish I had known how much support and help was already out there ready to come to one’s aid.  More simply, that a passion shared is change in the making.

So, give INVOLVE a call today.  Look at the website. Or follow it on Twitter @NIHRINVOLVE

No PPI person is an island in our book.

*By the way does anyone else view health and social care integration as I do – like the merger of Lloyds and TSB. Resulting in a poorer service to consumers over many years before being split into two once again?

You know how the story goes.  Cancer is way ahead of other conditions when it comes to patients having the opportunity to participate in clinical research.  But there’s still lots of room for improvement.

Today NHS England has announced the results of the annual National Cancer Patient Experience Survey.  Almost 70,000 patients took part in the 2013 survey.  And for the second year running it includes the results of people’s responses to questions about access to, and participation in research.  It is therefore becoming an important tracker of how this aspect of the patient experience in the NHS is changing.

This year’s survey includes a new question about whether people have seen information about research in their hospital.  It really is good news that 85% said they had and only 15% had not (I am not going to deal much with regional or local variations today but I invite someone to compare individual Trust survey results against those for recruitment as published by the NIHR Clinical Research Network Co-ordinating Centre (NIHR CRN CC).  Perhaps a patient-friendly ‘access map’ is called for?

Disappointingly only 32% of patients said they had had a discussion about research with a clinician or health professional, 68% had not.  This is more or less the same result as last year and suggests ‘patient choice’ to take part in research is struggling to get a lift nationally.  However, it is worth adding that the survey was conducted prior to the ‘Ok to ask’ campaign this year and a number of other local and national initiatives.

Yet, look a bit deeper and the variations are massive across from Trust to Trust (from 11% to 62%).  Reflecting on this and some of the feedback on our ‘Ok to ask’ campaign in May 2013 I would hazard a guess that more focus needs to be given to helping health professionals have these conversations and feel able to signpost patients and families in the right direction.

Finally, 64% of people went on to take part in research and 36% did not.  But again the variations are significant from Trust to Trust – from 37% to 94%.  Overall though, this result mirrors other evidence about the way people are positively disposed to taking part in research given the chance.

The report does not contain any discussion of possible reasons for the above results and perhaps this will be forthcoming although I am disheartened by the fact that I could see no reference to research in the Foreword to the report.

Much food for thought and I would welcome views…

What is the language of our health service today?  What words and phrases do we use about the NHS and what do they say about us?  More importantly, what do they say about where we want to get too?

Well, one place to start perhaps is the text of the three reviews of the NHS recently completed by Francis, Keogh and Berwick.

I did these imperfect, hurried, over-simplistic warts and all, ‘word clouds’* from the text of each report.  Fascinating and frustrating in equal measures, nonetheless it is interesting to dwell on what is common but also the differences between them.  These things carry a very strong health warning. I know.  But I wonder whether the instinctive responses they stimulate are really that out-of-kilter with everything I have seen or heard said by commentators so far?  What do you think?

I would make a few general comments with all the caveats above: that the language seems to encapsulate inertia not progress, there is little use of ‘active’ or, if you prefer ‘action-orientated’ words; the language feels abstract rather than personal; there is an absence of ‘glue’ words that bind an organisation together such as engagement, inclusiveness or involvement and; perhaps inevitably, there is little sense of what the future might be about.

If you click on each word cloud it should take you to a larger version of it.  If you click on the report names each will also take you to a site where you can find the full report.

Ok, enough of reading too much into things.  But I would be genuinely interested to know whether anyone has ever done a study of how the language of the health service has evolved,

Francis Report

Francis Report

Keogh Report

WordItOut-Word-cloud-242009 Keogh

Berwick Review

WordItOut-Word-cloud-242010 Berwick

* Word clouds are, in essence, picture representations of text.  Generally speaking the size of the word in the ‘word cloud’ denotes the frequency with which it is used in the text.  And arguably indicates the emphasis that this has in the meaning being conveyed in the text.

First off, an anecdote inspired by the Secretary of State for Health, Jeremy Hunt MP’s, announcement to mark the 65th anniversary of the NHS, that all older people will have a named clinician responsible for their care.

This is absolutely good news.  But it’s the view down the narrow end of the telescope.  I wonder how things might look if it was an older person looking down the other end of the telescope?

Gordon Lishman, the former DG of Age Concern (now called Age UK and looking ever more like the charity equivalent of ‘Poundstretcher’), once said at a conference, ‘we will know change is upon us when doctors and health care staff can remember an older person’s name and call them by it [sic].’

Anyway, I am thrilled by the fact that this whole episode reminded me to dig out and pass on a really rather excellent paper by a colleague, Peter Lansley, who is Professor Emeritus (Construction Business Management, Assistive Technology, Ageing) at the School of Construction Management and Engineering at the University of Reading.

His paper, published in Ageing and Society last year, is a review of the special programmes of ageing research run by the research councils and others over the last 15 years.  It is a highly readable critique of how the aforementioned bodies failed to grasp the opportunities to promulgate multi-disciplinary research into ageing: top-down, highly linear in their approach, and certainly not user-driven, most of these programmes have failed to deliver anything of more than passing interest.

You will see that one of the other observations Peter makes in his paper is the extent to which single disease concerns have dominated the view taken by funders, again to the detriment of the whole. Some years ago the government funders, charities and others pulled themselves together into what is called the UK Age Research Forum (UKARF).  In fact I have featured several of its meetings on these pages.  It was never the easiest of partnerships.  But it really does look in abeyance at the moment.

If you look at the website, there are no UKARF events listed and most of the forthcoming activity is disease specific and run by the relevant charity.  I note the Alzheimer’s Society provides the secretariat but they have a lot on their hands with the Dementia Challenge.  So, it might be good for someone else to step up to the plate although in my experience few organisations felt able to go that in the past.  And maybe UKARF is not the right model.  But, in the meantime, I fear another year of missed opportunity for multi-disciplinary and multi-agency ageing research lies ahead.

My apologies to Peter for taking so long to flag this paper up….