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.

The NHS would appear to be suffering an in-flight emergency. It is locked on auto-pilot. The cabin crew are unsure what to do. A few are close to panic. The nature of the problem is unclear. The causes indeterminate. No one was trained for this.

Cabin crew announcements become more insistent and louder by the minute. The passengers are told to stay in their seats with their seat-belts on. Window shutters remain closed. The drinks trolley stays firmly in its bay.

Disaster looks certain and everyone braces themselves for impact. Every Act of Parliament thar has ever had anything to do with the NHS flashes in front of their very eyes.

Until, that is, the youngest stewardess seizes the microphone from her boss. She pulls no punches as she candidly tells her fellow cabin-dwellers what is happening. ‘Any ideas?’ she asks. ‘Could any patients on board please make themselves known to the crew?’

Speaking to reporters afterwards here is what was recounted. First, some bright spark lifted their window shutter and it appeared the plane was still in one piece. Then they all did and it was clear they had never left the ground. So another who knew a thing or two went forward and helped the captain get the airplane off the ground. They didn’t understand the dials but, my, how they could pull back on that yoke.

A hysterical patient was given water by his neighbour and then sedated. They all agreed to even get rid of the baggage just to make sure the aircraft would lift off before the end of the runway. For they knew everyone’s life depended on it and they all wanted to get to their destination – which they had all chosen. One even had a friend at the other end who talked them down to the airport there.

Having listened to yet another radio discussion of the great and good about the NHS this morning with not a patient in sight….

And having observed last week’s spat between the overly defensive (we all work hard!) Royal College of General Practitioners (RCGP) and the ever so slightly hysterical Patients Association ( are there any solutions to the problems you would like to actually own yourselves?)….

One can’t help but think that we are partly at risk of talking this plane into the ground ourselves. There’s a lot of shouting going on and not a lot of listening. Cockpit communication has broken down. This can only spell doom or the hardest of landings at the very least.

And yet I wait to really hear ‘the system’ ask patients and the public for their help. Not just their views. Or feedback on the non-threatening. But their support in dealing with issues for which they have run out of solutions. And an acceptance that actually for many patients the present can feel no better than boarding a low budget airline.

I am reminded of a recent story about a GP’s Patient Participation Group. It has excelled at improving the decor. It has even had new automatic doors installed. Great! Brilliant! Just imagine how they might help improve doctor-patient dialogue. If only they were involved. But they are not.

Crash positions!

I am indebted to a good friend and colleague of mine who, some time ago, sent me this BBC News story from last year.  It reports on the rising concerns among Himalayan Sherpas about the lack of regard being shown towards their needs and the environment as scientists tromp all over the local geography.  To the extent that they are threatening to withdraw their labour.

I used it last week for an NIHR talk.  I read out extracts to the assembled post-lunch audience (yes, I care that much about my audience that I don’t like to work them too hard after lunch).  Before I did so, I asked them to substitute every mention of Sherpa with ‘patient’ and every mention of a geographical place with ‘health research’ or ‘NHS.’

I invite you to do the same…It sort of works.  Then ask yourself what would happen if we allowed the same behaviour in health research and what the outcome would be if patients and the public withdrew their labour?  Well, of course, this behaviour does happen all the time and it’s something of a wonder to me that patients don’t object more often.  They should do…and loudly.

Anyway, I like the story and thought I would share it more widely on the blog.  It’s just a different way of getting the message across that public involvement should be a core principle of any health research organisation – funders, journals, Government, universities* blah blah.  For it’s easier to get to the top of ‘Mount Everest’ if patients and researchers work in partnership.  We are also more likely to climb the mountain that matters to ourselves and our fellow human beings if it becomes a joint endeavour.

I mean sometimes I listen to researchers on the radio talking from the top of the mountain they have just climbed and think…what the heck are you looking at from up there?  For what did you climb that tor?  Put your crampons on and get your rope.  I think you’ll Fiennes that the action is over here.

Brief sermon from the mount is now over.  Parting of the oceans will come later when I head into town.

* By the way if you every want a true indicator of how financially troubled our universities are, next time you visit one: count the number of cranes and then count the number of empty rooms, labs etc.  Then do the same every time you go back.  Interesting.

So here’s my unsubstantiated personal theory.

It is that one of the root causes of the problems besetting today’s NHS’ is our failure to pay proper heed to the growing crisis in accountability and responsibility that has been a feature of our increasingly complex health system over the last seventy years.  From almost the day that the NHS was born in the arms of a post-war nation, we have shown a lack of courage towards involving the public appropriately in the maturation of the service.  In this vacuum, the evolution of the health service has been driven as much by unchecked romanticism (think of the Olympics ceremony) as anything else.  Ideology has stymied the pragmatism that was needed to meet successive challenges.  These challenges only get more daunting and difficult the more we delay.  In my view, we can only resolve them by reforming its corporate governance so that patients and the public are involved in the running of the NHS from top to bottom.

With that in mind, that’s why I tweeted yesterday in support of the idea going before the NHS Commissioning Board to explore the idea of a citizen and community assembly (NHS Civil Society Assembly).  You can find out more details about the proposal being considered at the Board’s meeting on Thursday 28th February in Manchester (you can register to attend) here (see Item 4).  It’s a start.

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The Guardian has posted its round-up of the on-line chat that I and others took part in regarding patient feedback in the NHS.  The conversation ranged far and wide with little focus but it was interesting nonetheless. The ‘Francis report’ was published the day after and I seem to recall someone somewhere tweeting that patient feedback would be the source of trust in the NHS.  Seemed a faintly overblown and risky claim to make.  Ensuring that people can give their feedback and know that their concerns will be taken up is critical.  But it will take more than this to restore people’s faith in the service.

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Rare Disease Day is coming up later this week on 28th February (see Rare Disease UK website), so it seems worth pointing to several recent news items that have focused on efforts to bring about greater flexibility in how we do clinical trials.  All with the intent of getting new treatments to people faster.  First, this from the USA where the Food and Drug Administration’s (FDA) is talking about approving so-called  ‘Breakthrough’ therapies after only a limited number of research studies.

Closer to home you may have picked up on the Empower: Access to Medicines campaign including e-petition to the UK Government which, as of today, has 711 signatures.  Les Halpin, who has MND and is one of the founder’s of ‘Empower’ was interviewed on the ‘Today’ programme in a curious piece which seemed to mash-up several issues: the right of people to choose to receive treatment with untried medicines (see also Lord Saatchi’s Bill in the House of Lords right now); how regulation is slowing up medicines development and; the problems with the EU Clinical Trials Directive.  The discussion is important but so is clarity of purpose, motivation not to mention the solution.

Talking of regulation, if you check out the Health Research Authority (HRA) website and the presentations from its recent ‘stakeholder forum’  you’ll see there is an update on its public involvement activities including the Sciencewise project looking at public attitudes to health research regulation.  I imagine we will see the results in late Spring and they should be fascinating.   Plaudits to the HRA for taking up the challenge to improve the evidence on what the public think in this area.

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And in other news, the NIHR School for Social Care Research has published the scoping review of ‘User Controlled Research’ by Peter Beresford and Suzy Croft.  A must read.  And finally, this looks wonderful, a new charity devoted to improving mental health research through the involvement of service users – ‘The McPin Foundation.’  Hopefully I will have cause to write at greater length about them in the near future.

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.