On failing well - Archie Cochrane's other legacy

I have been reading Archie Cochrane’s account of his life and work (not in general print – but I got it from the Cardiff University archives for £14.99 - http://www.cf.ac.uk/cochrane/index.html).  It is not at all as I expected.  Although there are elements of autobiography in the classic, seminal monograph, `Effectiveness and Efficiency’, these are anchored to the main, compelling argument for evidence-based medicine.  So, famously, he recounts his experience as a doctor in prison of war camps where, to his surprise, the lack of available treatment did not equate to bad outcomes.  He concluded that not enough was known about what worked, leading to `Archie’s law’ (as I have coined it) – “always assume that a treatment is ineffective unless there is evidence to the contrary.”  So much, so known (although the power of the argument still has the capacity to stun even now).

What surprised me though in the memoir is the tone of it – honest, to the point of painful, spiky and personal.  There is the unvarnished account of frustrations – taking six years longer than standard to qualify as a doctor.  This was not only the diversion to join the international brigade in the Spanish civil war (what a generation), but also an abandoned PhD and some years following his Jewish analyst in exile across pre-war Europe.  He is candid about some of the personal problems which led him to seek this help and thwarted, it appeared, his adult relations.  He attributes some of these difficulties to his early years with a distant, Calvinist upper class family. 

The frustrations were not only personal.  This book also charts his work after the war in running a pioneer epidemiology unit in Wales.  In one of his chapters he talks about a `decade of failures’ in his two valley research, which never quite achieved what he imagined in understanding the aetiology of pneumoconosis.   And he also expresses a feeling of shame in his long stints as sole medical officer of a series of prisoner of war camps – at having in some ways bypassed the `real war’ or the glittering medical career of his contemporaries.  Indeed, his account of his wartime experiences focuses on sorting out food parcels and digging latrines.  Another kind of heroism.

The tone throughout is humane, self-searching and challenging – of himself as well as others.  He saw himself as outside the establishment.  A brilliant story which gives you the measure of the man is in his evaluation of the new coronary care units.  A trial was set up comparing these with care at home, although the cardiologists were loath to subject such self-evident effective treatment to such scrutiny.  As Cochrane says (p211):

“The results at that stage showed a slight numerical advantage for those who had been treated at home.  It was of course completely insignificant statistically.  I rather wickedly compiled two reports, one reversing the numbers of deaths on the two sides of the trial.  As we were going into committee, in the anteroom, I showed some cardiologists the results.  They were vociferous in their abuse: `Archie’, they said, `we always thought you were unethical. You must stop the trial at once…’  I let them have their say for some time and then apologised and gave them the true results, challenging them to say, as vehemently, that coronary care units should be stopped immediately.  There was dead silence and I felt rather sick because they were, after all, my medical colleagues.`

So, no clubbable man he.   Even a colleague he respects is described as `overweight… rude, bad tempered’.    This impatience with colleagues, combined with deep empathy for patients (from the Russian tubercular prisoner dying in his arms in one camp to the rather cranky distant cousin who he tenderly cares for at home) shines through on every page.   Although never married, he created a wonderful home and garden which became a refuge for many – including the rather cranky distant cousin and companion who were cared for by him to the end.  There is something about the unconventional but far from solipsistic life.   And an unwavering commitment to scientific method (to the comic extent of tracking down all family members at a funeral for faecal samples in tracing a hereditary disease)  and frustration with the rituals and norms of medical practice.  And this is perhaps part of his greatness – his ability to shape medical science.  And perhaps be a disruptive innovator, in Christensen’s terms [http://www.claytonchristensen.com/key-concepts/].  His struggles, his chequered life story had as much a part to play as his undoubted intellectual vigour and vision.

This chimes with another `great life of medicine’ which I was thinking about – Cicely Saunders.  I haven’t  read her letters or biography,  but from the BMJ short profile [http://www.bmj.com//content/suppl/2005/07/18/331.7509.DC1], I was struck by parallels with Archie Cochrane.  Born to a privileged but cold and distant family, plagued by chronic back pain, finding affinity with the marginalised (including the thread of significant Polish men) and quietly defying convention by living in shared housing with friends even after marriage.  Hers was  a protracted path to qualified doctor – via social work (hospital almoner) and nursing.  She struggled for acceptance at a time where social and professional expectations were narrow.  And yet it is because, not despite, of these tensions that her pioneering vision of palliative care – and her understanding of `total pain’ - was born.

I was thinking of this as the pressure seems even greater now for our teenage children to make directed choices and compile mini-dossiers of activity and unblemished achievement even before they reach college.  What place for those who need time to stumble, and struggle, and try many paths before finding work where they can make a difference?     

On listening and time to care

My weekly run with a GP friend has become a breathless litany of the ways in which she feels she and her practice are failing patients.  Last week, she resigned after almost twenty years as a GP partner in a deprived part of London.   She left with regret – still loving the doctor-ing, but no longer feeling she can do it properly.   How to shoehorn the various problems of an asylum seeker with secondary syphilis and compound health problems into a ten minute consultation?  Or a woman with depression and crippling arthritis caring for her husband with advanced dementia?

This has become topical with recent focus on the purpose and future of general practice, from the Kings Fund’s conference last month to words from the outgoing RCGP chair last week.  Similar debates have been had about the need to strengthen the general physician role to provide person-centred care in hospital.

At the risk of sounding like a romantic, there is something special about the general practitioner role and its place in British society.  A seminal work is John Berger’s moving, lyrical (almost mystical) short account, A Fortunate Man, shadowing a country doctor in 1950s rural England, accompanied by haunting photographs http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1463119/.  I remember hearing the late, lamented Kieran Sweeney describe a key role of the general practitioner to `bear witness’ to life (and death) events, as well as more technical forms of treatment.  In this vein, Iona Heath’s monograph from nearly twenty years ago is still worth reading for thoughtful reflections on what she calls the mystery of general practice http://www.nuffieldtrust.org.uk/sites/files/nuffield/publication/The_Mystery_of_General_Practice.pdf.    I like her description of the GP’s role in helping the patient to make sense of illness – the search for meaning being something which doesn’t fit well with performance metrics. 

Many have been influenced by the great US clinician/writer (and now TEDx speaker), Rita Charon, who helped to develop the field of `narrative medicine’ that honours the stories people (patients) tell and how to listen http://jama.jamanetwork.com/article.aspx?articleid=194300.    A good doctor should have `the capacity for attention and the power of representation’.  In her book, she starts with the great case story of Luz, who she dismisses as a time-waster before understanding the reality of her underlying problems in an act of `clinical imagination’.   

In this country, the torch has been carried by many others, including Trish Greenhalgh’s work on storytelling and its place in the clinical consultation http://www.bmj.com//content/318/7175/48.1.  That many of these leading thinkers are women is perhaps no coincidence.  Evidence this month from Karen Bloor’s team in York shows that women clinicians spend longer on each patient consultation (2.24 minutes to be precise)with a more `relationship-building’ style  http://hsr.sagepub.com/content/18/4/242.abstract

So there is good understanding of the power of narrative and interpretation in clinical encounters.   Medical and nursing education is now more focused on improving communication with patients, using ever more sophisticated role-playing, simulation and interactive teaching of `softer skills'.  But there is often little time to truly `honour the stories of illness’ in a system under strain.

I was thinking of all this as my frail, elderly father goes in and out of hospital (currently over a week waiting in a busy medical care assessment unit until a bed comes free) with a host of complex, overlapping problems.  No one seems to have time to ask him how he is and what has changed.  And it is difficult to understand who, if anyone, is holding the ring.    So how can we bring the best of a female-styled Dr Finlay into the twenty first century? 

Also posted on BMJ blogs 14 October 2013 - http://blogs.bmj.com/bmj/2013/10/15/tara-lamont-a-female-dr-finlay-for-the-21st-century

The Life (Social) Scientific

I love the Radio 4 programme The Life Scientific, ably presented by Jim Al-Khalili http://www.bbc.co.uk/programmes/b015sqc7/profiles/jim-al-khalili.  Who’d have thought that leading medical imagist Mark Lythgoe started out in the danceclubs of Madchester, having botched his A levels? Or that a chance encounter with a chemical engineer led Molly Stevens to set up her groundbreaking stem cell research laboratory?   Or the amazing paradox of the Nobel prizewinning geneticist Paul Nurse who discovered the truth of his own birth only recently (his account well worth looking up http://www.nobelprize.org/nobel_prizes/medicine/laureates/2001/nurse-bio.html)?  It’s the non-linear nature of these intellectual life stories, the serendipity and range of influences – direct and indirect - which makes it so interesting.

So I was intrigued to stumble across an old (2005) Nuffield Trust report the other week, edited by Alan Oliver, where twelve eminent health service researchers were asked to reflect on their academic life journeys and the people and places that have influenced their work.   It’s a good read http://www.nuffieldtrust.org.uk/sites/files/nuffield/publication/personal-histories-in-health-research-aug05.pdf , although dated in some ways.   It seems another age where, for instance, Rudolf Klein could step into academic posts after twenty years of journalism (in the words of a colleague, `an eighteenth century essayist at heart’).  He describes elegantly the ways in which he was shaped by colleagues – and managed to sidestep much of the academic torpor and in-fighting.  It is in many ways a story of hybrids and `boundary spanners’ at the very highest levels.  Alan Williams flits between setting up pioneering health economics courses at York and advising Roy Jenkins at the Home Office.  Alison Kitson from evaluating new modes of nursing practice to the top table at the RCN.  Walter Holland from studies of screening in south London to devising the RAWP formula.  Not much clear blue water between policy and research there.

The influence of individuals as mentors comes over strongly.  That is surely true, although the career-accelerating effect of chance patronage and interest smells somewhat of the old boys club.  Indeed, one contributor mourns the passing of a culture of expert closed committees in favour of more open consultation (not always done well), saying `we have lost a tradition and not yet found a [new] paradigm’.   Elsewhere, the insecurity of the old system is apparent.  It is a tale of hand to mouth six month to one year contracts (sometimes unrelated to the original field of interest).    A warning against false nostalgia, perhaps, in this day of NIHR fellowships and career paths for researchers.

It shows too the broad church of health services research with its origins in public health and epidemiology.  Other disciplines are represented here, from medical (sic) sociology to health policy.  I remember at a conference someone reflecting on the `epistemic fit’ between different areas of clinical practice and research discipline.  General practitioners may be more comfortable with ethnography and complexity theory than laboratory-based research scientists.  Although this collection confounds easy generalisations. Sometimes there are direct challenges across the contributing chapters.  Rudolf Klein and Alan Williams clash swords over whether technical solutions (such as QALYs) can override difficult political negotiations; in the words of the former, `implicit rationing – veiling the decision-making criteria and process – [seems] entirely rational.’  But not acceptable perhaps to the godfather of health economics.

I liked too the injection of some edgy personal reflection from Jennie Popay – from the streets of Salford to academic chair, while still feeling like an outsider.

We need more of this sort of reflection and personal stock-taking.  I think that's why I've enjoyed recent inaugural lectures (for instance of Martin Marshall and Naomi Fulop at UCL) - the chance to look back and make sense of a career midway and the ideas and people who have shaped them.  It’s helpful both to understand what helps to nurture and sustain intellectual work – and individuals - who will make a difference.  And it satisfies our curiosity.  Modern recruiting practice could learn much from the example of Walter Holland.  What singled him out as a researcher for his first trial spanning many study sites?  He was the only candidate with a car…

Reflections from Health Services Research Network (HSRN) Symposium 2013

A good conference leaves you wanting more… tantalising glimpses of studies only presented in snapshot,  the parallel sessions you couldn’t attend, the brief but intense chats when unlikely groupings of people form at coffee (`maybe there’s a project in that?’), and all those darn philosophy books which Trish Greenhalgh makes you feel are required reading.  If only there was more time.

This year’s HSRN symposium delivered all this and more.  The highlights for me included a great opening plenary with David Fillingham explaining the ethos behind the incentivised improvement programme of Advancing Quality in the north west – and Matt Sutton describing the HS&DR funded project which provides hard evidence of impact (and an NEJM publication to boot).  If there were any questions about the relevance of applied research to the service, this alone would have justified the entry price.   This was followed by another key plenary, where Martin Roland displayed his usual forensic powers in exploding some of the myths around preventing emergency admissions, from a focus on `frequent fliers’ to falsely positive evaluations.  We then had four packed parallel sessions exploring in more detail some of the evidence around service solutions to reducing admissions, from evaluations of 111 to virtual wards to predictive tools.  In each strand, there was someone providing a service perspective to reflect on what these findings meant for those delivering and commissioning care.

So there was content, in terms of showcasing important research.  But there was also thinking time.  Trish Greenhalgh provoked, challenged and  entertained in equal measure.  Her contention was that new, more engaged research approaches “are strangled at birth in the name of rigour”.  She argued that the research establishment was hostile to the kind of health services research which might make a difference, providing insight into the complexities  (or, in Wittgenstein’s term, `the rough ground’) of the NHS.  These threads were picked up in the closing plenary on the future of health services research.  Kieran Walshe gave us a panoramic sweep on the funding landscape, pointing out the disconnect between what we spend money on and our research effort.  For instance, the vanishing small proportion of funds on research into the workforce,  which represents 70% of the NHS budget.  The biomedical sciences still hold sway despite many of today’s problems (complex chronic conditions such as dementia) requiring fewer trials of drugs or technologies and more insights into how organisations and clinical teams provide compassionate care.   Martin Marshall also spoke – with authority as a clinician, researcher and policy-maker at the highest level – of the ongoing difficulty in getting research into practice.   He cited a trust meeting where he prepared a short summary of evidence on reducing admissions, which was received with thanks by the group who then went on to discuss the introduction of two interventions which his paper had indicated as proven ineffective.  Such is life in the NHS.   Cathy Pope urged researchers to get stuck into these kind of arenas, to be bolder in asserting what the evidence says (she for one, from her research in this area, could account for many of the perceived problems with the new 111 service).

Kieran Walshe urged health service researchers to align themselves more closely with healthcare organisations – not just as study sites, but as partners in the mission to bridge some of the key knowledge gaps.  Martin Marshall also pointed to models of embedded research, such as the modellers working alongside clinicians at Great Ormond Street.  In the audience, Sue Mawson pointed out that this was what CLAHRCs were already starting to do, with matched funding underwriting true service commitments.  Many speakers expressed optimism about the opportunities provided by changes in the research landscape with the introduction of AHSNs, cementing new relationships between service and research.

So this conference did not shy away from the big debates on future directions and positioning.  But for me it was also about the smaller moments.  Hearing about an action research study on an outreach mental health service with poor attendance from minority ethnic groups because of stigma which was turned around when rebadged as a “liveliness” project; ethnographic work which uncovered the important “secret second handover” between paramedics and nurses in emergency departments; a librarian at his first health services research conference giving an impassioned plea to researchers to use overlooked UK databases like the British Nursing Index bypassed by dominant (US-centric) search engines Medline or Embase; the way in which involving patients changed the set of outcome measures used in studies of rheumatoid arthritis, adding the key symptom of fatigue; learning about the `process decoupling’ of operating teams using the surgical safety checklist.  There were a hundred more moments like this for me.  Here’s to next year.

Finding things to stop doing...

Early exponents of evidence-based medicine put forward an optimistic view of future healthcare, where the availability of robust information would allow clinicians to select the most effective treatments – and to stop doing things which were shown not to work.  But this last part has proved elusive.

A recent paper by Sarah Garner and colleagues from NICE tested out the use of Cochrane reviews to identify low value practices which might inform local disinvestment decisions http://jhsrp.rsmjournals.com/content/18/1/6.full.  NICE had been criticised by the Health Select Committee in 2008 for lack of progress in supporting NHS drive for efficiency savings.   Very few technologies had been identified as absolute candidates for disinvestment.  Indeed, the authors noted that only two topics featuring low value practices had been selected in the last six years for full NICE guidance development.   A really interesting contention was explored in this paper – greater certainty and levels of evidence were required for a `do not recommend’ decision by NICE, than a treatment option left to the discretion of the clinician.  This is because of the inevitable challenge (in the courts) if existing treatments are discontinued.

And the UK is not alone.  The same paradox was noted by Chris Henshall speaking at the Health Technology Assessment International conference last year.   He remarked wryly that the search for low-hanging fruit (ineffective procedures) often ignored the fact that they were still firmly attached to the tree.  He did however commend NICE for one of the few examples of a `managed exit’ for low value procedures, with guidance on the use of prophylactic antibiotics for endocarditis.

Other attempts to throw light on disinvestment in the NHS include an NIHR-funded study by William Hollingworth in Bristol http://www.netscc.ac.uk/hsdr/projdetails.php?ref=09-1006-25.  This study uses routine data to identify high levels of practice variation as a proxy to identify procedures of uncertain clinical value.  In this way, he draws on classic Wennberg notions of uncertainty or preference-sensitive care for procedures such as radical prostatectomy.  Hollingworth goes on to work up guidance for local commissioning groups and explore practice and beliefs on de-commissioning. 

It reminded me too of wider NIHR-funded work on commissioning practice and the use of evidence http://www.netscc.ac.uk/hsdr/projdetails.php?ref=08-1808-244.   Some interesting observational research on decision-making by commissioning organisations was striking in the disproportionate effort given to certain areas of activity.  For instance, individual funding requests (for exceptional treatments for individual patients) required high levels of scrutiny and evidence for quite marginal areas of spend and activity.   

Muir Gray and others have long bemoaned the lack of information or informed decision-making about huge areas of clinical care, from epilepsy to pain management.  This kind of inverse evidence law helps to explain just some of the difficulties in trying to realise savings in the NHS.    

Some of the most encouraging developments to reduce waste and enhance value in recent years has come with programme budgeting and pathway redesign.  This might include shifting care, role substitution (such as nurse consultant-led clinic and triage centres) and reviewing thresholds and optimal levels for stepped care.   Examples such as the initiative in Oldham to re-shape services for rheumatology, orthopaedics and chronic pain suggest the power of using evidence with engagement from clinicians, managers and patients to re-think care processes http://www.rightcare.nhs.uk/downloads/Right_Care_Casebook_oldham_IPH_april2012.pdf

There has been a belief that to identify ineffective practice or treatments `the evidence will speak for itself’.  Progress to date suggests that it is difficult to make absolute assertions about interventions of low clinical value.  A more engaged process to eliminate waste across whole programmes of clinical activity is likely to yield more fruit – with the clinicians shaking the tree.