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.

The Secret Life of Organisations – lessons from case study research

Social science research has an honourable tradition of de-familiarising activity, processes and culture which have become embedded as normal practice - `how we do things here’.   A key research approach is organisational case study research.   But there is often little understanding of the art (or science) of research into organisations or what makes a good case study.   This was the subject of a recent seminar hosted by the Health Services Research Network at Manchester Business School.   Kieran Walshe chaired the event, with a formidable array of talent from different fields.   The unifying theme was the organisational case study, but the approaches ranged widely from historical archival research to contemporaneous sense-making of new organisations.  We heard from a range of disciplines, including management and organisational studies as well as health services research.   And the subjects of research ranged from code-breaking units to operating theatres to clinical genetic centres.

We opened with Chris Grey (Royal Holloway London), talking of his fascinating work on wartime signals intelligence in Bletchley Park (http://taralamont.blogspot.co.uk/2012/10/from-bletchley-park-to-nice.html).  Contemporary sources and official historians described the chaotic nature of the organisation – so how did it achieve such astonishing results?  Chris Grey used a compelling range of evidence and analysis to argue that the success was because and not despite its organisational hybridity.  He described it as a `twisting together’ of routine data processing and semi-mechanised work with esoteric, highly skilled cryptanalysis.  Its organisational porosity – sucking in expertise from other sources (such as indexing capacity from the retail sector) – gave it an adaptability which was used to `patch’ organisational fissures at a local level without recourse to more elaborate longwinded structural solutions.  The provisional, adaptive nature of the enterprise was not a weakness, but its greatest strength.

We moved rapidly from signals intelligence to de-coding the work that surgeons do.  Justin Waring (University of Nottingham) explained the use of ethnography to `make strange’ the ritualistic responses to events and shared norms of professional and inter-professional groups – in this case, operating teams.  His work has helped us to understand for instance what kind of adverse events are seen as worth reporting by surgeons and why.  He also explained the strengths of case study research as a method – particularly, the ability to zoom out (to explain the context and inter-connectedness of forms) and zoom in (to provide depth and focus on particular processes) within a single study.

Ewan Ferlie (Kings College London) described a broad arc of organisational case study research and its epistemic context, from the classic single case such as Lukacs’ account of five days of the Dunkirk crisis (refreshing to have a different example from the much-cited Allison’s account of the Cuban missile crisis) to broader organisational research ranging from Mintzberg to Pettigrew.   He talked about his work on managed clinical networks, using tracer activity such as implementation of NICE guidelines on urology and observational research to `look at what people do not what they say’.   There was some discussion about good practice in case study design.  Where social scientists are often equivocal about the optimal number of study sites, Ewan Ferlie was robust  – in his experience, the right number is always eight!

Graham Martin (University of Leicester) then picked up issues about methods and design in describing his work on the sustainability of new genetic services.   He cited classic works from Yin to Gerring, but cautioned against over-reliance on deductive logic, as there will always be uncontrolled variance in the dynamic, complex world of healthcare.  Although his study had used a clear 2x2 sampling frame for genetic services, based on key variables of interest, the status of participating sites changed during the course of the study.   He also noted that the best organisational case studies needed adaptive, highly skilled researchers in the field, with iterative cycles of data collection and analysis.   He had found practical suggestions helpful from case study methodologists such as Eisenhardt – for instance, her suggestion of creating paired comparisons to look for points of commonality and divergence in a structured way.

We ended with a presentation from Nick Emmel (University of Leeds) which was almost philosophical.  He noted that the hallmark of organisational case study research was that the question `what is a case’ or `what do I have a case of?’ is constantly posed throughout the research.  This in itself was a key research tactic to interpret and explain activity and causal mechanisms.   The cases might change and evolve during the course of the study.  He emphasised that the selection of appropriate topics was crucial – the ideal cases should bundle together ideas, contexts and outcomes to develop and test theories of the middle range.   Overall, Nick Emmel’s contention was that we should move from an idea of a case as a passive noun to a more active verb `casing’  where cases are created from the research activity.

If these stimulating thoughts were becoming a little abstract, the audience provided some grounding during questions.  One researcher questioned whether case study research was more or less accessible to managers than other forms of evidence.  On the plus side, this kind of research provided stories which was a powerful form of transmitting learning (and familiar to senior leaders in the NHS who had been through management or business school).  But others challenged the timescale for carrying out longterm observational research and how this could deliver usable findings to managers who needed immediate answers.  It was agreed that there was a place for 3-5 year indepth studies, but not all knowledge gaps needed primary research.  

There were interesting points about the different team composition needed for good case study research.  Participants noted that biomedical research was often predicated on a hands-off principal investigator and much work done by teams of junior researchers.  In case study work, senior researchers needed to engage in the fieldwork and respond to emerging data challenges and design.  The quality of analysis and write-up was particularly important for this kind of research.

Other participants noted the exceptional nature of some of these interesting, atypical cases. Would this provide distorted findings?  On the contrary, some researchers argued that outliers might yield important learning but it would always be important to contextualise the case against the population from which it was drawn. 

So a rich and stimulating seminar, which reminded us of the strengths of organisational case study research for health.  It remains the best way to provide what Flyvberg calls `concrete, context-dependent knowledge’.  Participants agreed it was not appropriate to identify a single blueprint for case study research, given the diversity of methods, but greater attention could be paid to study design.   This included making explicit choices about sampling or selecting cases and actively looking for data which challenged emerging lines of enquiry.   There were practical tips which could be shared from more experienced research teams, especially given the challenges of ensuring consistency but flexibility in comparative case study work.   Best studies allowed for `thick description’ – one of the strengths of case study research - within a rigorous, analytical, theory-driven framework.   A key problem was how to generalise findings from descriptive, context-dependent case studies.  This was difficult but possible through cross-case analysis and in deliberate theory-building.    Although there were no easy answers, it may be helpful to identify common standards and tenets of good practice for those funding, delivering and using research of this kind.  At its best, case study research provides the shock of recognition – literally, thinking or seeing afresh the organisations where we work and receive healthcare.