Unintended consequences and Health IT

Last week along with other members of the Irish CCIO group I attended the UK CCIO Network Summer School. Among many thought provoking presentations and a wonderful sense of collegiality (and the scale of the challenges ahead), one which stood out was actually a video presentation by Dr Robert Wachter, whose review into IT in the NHS (in England) is due in the coming weeks and who is also the author of “The Digital Doctor: Hype, Hope and Harm at the Dawn of Medicine’s Computer Age”

digitaldoctor

Amongst many other things, Dr Wachter discussed the unintended consequences of Health IT. He discussed how, pretty much overnight, radiology imaging systems destroyed “radiology rounds” and a certain kind of discussion of cases. He discussed how hospital doctors using eHealth systems sit in computer suites with other doctors, rather than being on the wards. Perhaps most strikingly, he showed a child’s picture of her visit to the doctor. in which the doctor is turned away from the patient and her mother, hunched over a keyboard:

childspic.png

This reminded me a little of Cecil Helman’s vision of the emergence of a “technodoctor”, which I suspected was something of a straw man:

Like may other doctors of his generation – though fortunately still only a minority – Dr A prefers to see people and their diseases mainly as digital data, which can be stored, analysed, and then, if necessary, transmitted – whether by internet, telephone or radio – from one computer to another. He is one of those helping to create a new type of patient, and a new type of patient’s body – one much less human and tangible than those cared for by his medical predecessors. It is one stage further than reducing the body down to a damaged heart valve, an enlarged spleen or a diseased pair of lungs. For this ‘post-human’ body is one that exists mainly in an abstract, immaterial form. It is a body that has become pure information.

I still suspect this is overall a straw man, and Helman admits this “technodoctor” is “still only [part of] a minority” – but perhaps the picture above shows this is less of a straw man than we might be comfortable with.

Is there a way out of the trap of unintended consequences? On my other blog I have posted on Evgeny Morozov’s “To Solve Everything, Click Here.”  a book which, while I had many issue with Morozov’s style and approach (the post ended up being over 2000 words which is another unintended consequence), is extremely thought-provoking. Morozov positions himself against “epochalism” – the belief that because of technology (or other factors) we live in a unique era. He also decries “solutionism”, a more complex phenomenon, of which he writes:

I call the ideology that legitimizes and sanctions such aspirations “solutionism.” I borrow this unabashedly pejorative term from the world of architecture and urban planning – where it has come to refer to an unhealthy preoccupation with sexy, monumental and narrow-minded solutions – the kind of stuff that wows audiences at TED Conferences – to problems that are extremely complex, fluid and contentious. These are the kind of problems that, on careful examination, do not have to be defined in the singular and all-encompassing ways that “solutionists” have defined them; what’s contentious then, is not their proposed solution but their very definition of the problem itself. Design theorist Michael Dobbins has it right: solutionism presumes rather than investigates the problems that it is trying to solve, reaching “for the answer before the questions have been fully asked.” How problems are composed matters every bit as much as how problems are resolved.

As will be very clear from my other article, I don’t quite buy everything Morozov is selling (and definitely not the way he sells it!) , but in this passage I believe we are close to something that can help us avoid some of the traps that lead to unintended consequences. Of courses, these are by definition unintended, and so perhaps not that predictable, but by investigating rather than presuming the problems we are trying to solve, and not reaching for the answer before the questions have been fully asked, perhaps future children’s pictures of their trip to the hospital won’t feature a doctor turning their back on them to commune with the computer.

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Great moments in personality research: Study of the personality of patients with spontaneous pneumothorax

If it wasn’t for EMBASE screening, I would never have come across this gem:

 

Study of the personality of patients with spontaneous pneumothorax

Martín Martín M1, Cuesta Serrahima L, Rami Porta R, Soler Insa P, Mateu Navarro M.

INTRODUCTION:
Medical psychology has contributed to a greater understanding of many diseases that are predominantly medical and has also helped to improve prognosis. This study explores a surgical entity, namely spontaneous pneumothorax.
OBJECTIVES:
The aim was to compare the personality, depression, anxiety and type-A behavior pattern in a group of 34 patients with spontaneous pneumothorax to a group of 33 control patients admitted for a variety of minor surgical procedures.
MATERIAL AND METHODS:
The following objective assessment instruments were used: Trait Anxiety Inventory, Beck Depression Inventory, Jenkins Activity Inventory, Eysenck Personality Questionnaire. The questionnaires were administered before the intervention of the surgeon and after an informative interview.
RESULTS:
The rate of type-A behavior was statistically different in the two groups. No differences were seen for personality, depression or anxiety.
CONCLUSION:
We conclude that type-A behavior patterns should be reduced in patients who suffer spontaneous pneumothorax in order to improve outcome.

I love that sweeping conclusion “type-A behaviour patterns should be reduced” – just like that! – but also admire the researchers choice of an apparently unpromising area to research. I will try, if I have time, to read the original paper.

Technology Symposium at the International Psychogeriatic Association, Berlin, October 14th 2015.

( I  began writing this post just after the meeting but for various reasons didn’t complete it. I have decided to leave the beginning unchanged despite the overlap with a more recent post)

 

Following on from my prior posts from a Hackathon , a CCIO meeting , and a symposium on trial methodology , I am going to continue using this blog as a sort of reflective journal on various meetings I go to. The technology/healthcare interface seems to be the main topic of these meetings.  There also seems to be a certain evolution here – from tech evangelisation at the Hackathon, to more sober tech governance/implementation at the CCIO, to the trial methodology symposium’s more tangential take on technology … and now to a big, grown-up (not that the other meetings weren’t grown up) international meetings.

I went to the International Psychogeriatric Association meeting in Berlin – the main focus of which is clinical factors relating to psychiatry of later life (or old age psychiatry, or psychogeriatrics, or older adult mental  health, or whatever combination of those words suits) – there was however a symposium session on technology in this field. This symposium doesn’t have any kind of microsite I can direct you to – just the general International Psychogeriatric Association page and you can scroll down to see the details of the speakers.

Assistive technology is one of those areas which is subject every so often to breathless pieces in the papers about the latest somewhat sinister developments in Japan. (that is as far as my first draft went! The rest is written some weeks later)

What was impressive about all three speakers was their seeming immunity to some of the more hype-ish aspects of this field. The first speaker was  Josien Shuurmans  of the Dutch-led eCare@home – which involves “Tablet-Based Ambient Assistance for Older Adults with Bipolar Disorder or Recurrent Depressive Episodes” Shuurmans gave a presentation which covered the pitfalls as well as the promise of such a project, particular the multinational ones which the European Union are so fond of funding. She described a very user-focused project – among the learnings she conveyed was the importance of ensuring clinicians bought into the project and were comfortable with the technology as well. Listening to her, eCare@home sounded like something that could be beneficial at any age, so I asked her how age-specific it is. It turns out certain features such as the visual design do take into account eyesight issues and motor skills issues, but these apply to any age group, especially given the general health issues that often accompany psychiatric issues.
Next was Maurice Mulvenna , Professor Computer Science in the University of Ulster. His speech was specifically on  “Monitoring and Analysis of Sleep Patterns of People with Dementia” but was a much more wide ranging and stimulating talk, which included this great image which says so so much about design vs the user experience. Mulvenna discussed the pitfalls (again!) of the apparently straightforward process of monitoring the sleep patterns of people with dementia, touching on a wide range of issues.
Finally Jeffrey Soar of the University of Queensland, with a vast range of experience in healthcare and in evaluation of technology in health care  – his talk was on “Technological Support for Dementia and Ageing” the meat of which was discussing the process of evaluating assisted living technologies, and what works and what doesn’t. This is an area in which the initial hype has been tempered by experience. What doesn’t work is perhaps easier to define than what works – solutions imposed by well meaning family  (or wider society) without consideration of the person’s own wishes or desires, and technology-focused approaches that can do cool things but perhaps aren’t really what the person wants. One of Prof Soar’s observations has already re-shaped my vision of what healthcare could be so I guess that’s a tribute.

 

Every sufficiently advanced little thing she does is indistinguishable from magic

This has been the longest hiatus on this blog so far, and  my last post on November 19th wasn’t exactly a deep meditation on anything.

I am hoping to re-invigorate things a little by successively blogging about three events I attended in the recent past – one last week, one the week before that, and one way back in October. Thinking about it I think this blog will increasingly become a platform for me to working out my thoughts on various matters relating to the intersection of technology and healthcare, medical education, and evidence-based practice/methodology questions. More general writing and “curation” of my old writing will appear on my other blog

On November 25th I attended another meeting of the CCIO, following on from the last one in September. The same caveat (“not only are these opinions not those of the CCIO, the HSE, or any other institution I may have links with, they are barely even those of myself.”) applies.

Unfortunately I couldn’t make the entire day so missed some of the morning session. I was fortunate enough to catch the talk by Robert Cooke , IT Delivery Director for Community Health, which encompasses my own professional area of mental health. As Robert said in his presentation infrastructure-wise particularly, mental health is starting from a low base for eHealth – and therefore infrastructure development is an important place to start.

As with pretty much all of the presentations I have seen at the CCIO Robert’s was particularly impressive in its blend of enthusiasm and a tough-minded realism about the size of the challenge. No one at these meetings is getting up and announcing that tech will magically sort out what ails healthcare. Indeed Robert strongly made the point that systems and processes need to be addressed before technology is applied, rather than waiting for it to be a magic bullet.

There were other very interesting presentations but the highlight was the breakaway group. In a relatively small group myself and three other CCIO members were facilitated in addressing  a) our vision for what eHealth could make the healthcare system look like in five years time, b) what barriers and enablers exist relating to this vision, and c) what would need to change. This exercise was part of the work UCD’s Applied Research in Connected Health team are doing on Ireland’s eHealth journey. As often happens, the discussion was so stimulating that we didn’t get to c) (and barely covered b) in time)

During the discussions about “the vision thing”, the famous Arthur C Clarke quote ““Any Sufficiently Advanced Technology Is Indistinguishable From Magic” kept coming into my mind, along with a memory of a point about Assisted Living Technologies made by Jeffrey Soar at the International Psychogeriatric Association congress in Berlin (which I drafted a blog post on and hope to actually complete very shortly) – those assisted living technologies that are successful are unobtrusive, in the background, invisible.

So much was the Arthur C Clarke quote going round my mind I was impelled to tweet it:

It turned out when I tweeted this that an extremely witty twist on the quote has already been minted:

So my vision for the future of healthcare is sitting in a room talking to someone, without a table or a barrier between us, with the appropriate information about that person in front of me (but not a bulky set of notes, or desktop computer, or distracting handheld device) in whatever form is more convivial to communication between us. We discuss whatever it is that has that person with me on that day, what they want from the interaction, what they want in the long term as well as the short term. In conversation we agree on a plan, if a “plan” is what emerges (perhaps, after all, the plan will be no plan) – perhaps referral onto others, perhaps certain investigations, perhaps changes to treatment. At the end, I am presented with a summary of this interaction and of the plan, prepared by a sufficiently advanced technology invisible during the interaction, which myself and the other person can agree on. And if so, the referrals happen, the investigations are ordered, and all the other things that now involve filling out carbon-copy forms and in one healthcare future will involve clicking through drop-down menus, just happen.

 

That’s it.

 

 

Behind the Heimlich manoeuvre – review of books by Henry Heimlich, Cecil Helman, Henry Marsh, TLS 15 October 2014

Probably the highlight of my writing career so far . Not only because of its place of publication (and its featuring on the website) but also because it is the most fully realised piece I have written. It functions well as an honest to goodness book review but has a personal perspective that my work often lacks. Or seems to lack.

I would love to explore the theme of the opening paragraph – about the general dissatisfaction many doctors feel, and how much of this is situation dependent, and how much is inherent to either the work or themselves – further.

BEHIND THE HEIMLICH MANOEUVRE

SÉAMUS SWEENEY
HENRY HEIMLICH
HEIMLICH’S MANEUVERS
MY SEVENTY YEARS OF LIFESAVING INNOVATION
253PP. PROMETHEUS. PAPERBACK, $19.95.
978 1 61614 849 2

CECIL HELMAN
AN AMAZING MURMUR OF THE HEART
FEELING THE PATIENT’S BEAT
135PP. HAMMERSMITH HEALTH. PAPERBACK, £12.99.
978 1 78161 019 0

HENRY MARSH
DO NO HARM
STORIES OF LIFE, DEATH AND BRAIN SURGERY
278PP. WEIDENFELD AND NICOLSON. £16.99.
978 0 297 86987 0

Published: 15 October 2014

In the Western world, at least, the medical profession generally enjoys high status. For sociologists, doctors incarnate various forms of power disparities. Medical science and medical technology have made spectacular progress since the Second World War; procedures such as LASIK laser eye surgery, to give just one example, that once would have seemed magical, are now near-routine.

And yet an air of discontent is evident in much of the discourse of modern medicine. Like many others, the medical profession is under question, if not attack, on a range of fronts. Complementary remedies are increasingly popular, often with practitioners as well as patients, despite the advent of evidence-based medicine and numerous books that have discredited their claims to efficacy. A succession of scandals in Britain and elsewhere has undermined public trust in doctors and nurses. Lewis Terman’s classic study of “gifted” individuals, published in 1954, found that physicians tended to feel inferior relative to those of comparable attainment in other fields, and the Grant Study, George Vaillant’s epic survey of adult development, following the Harvard Class of 1944, identified self-doubt as the feature distinguishing physicians from control subjects.

Henry Heimlich’s autobiography does not provide much evidence of self-doubt or of feelings of inferiority. The Heimlich manoeuvre is one of those medical interventions which have embedded themselves in public consciousness; so much so that I imagined the process was named after some nineteenth-century titan, like an anatomical feature such as the ampulla of Vater or the foramen of Magendie. Heimlich is not merely a historically recent figure, born in 1920, but is still with us. The autobiography opens in 1979 with a demonstration of the manoeuvre on Johnny Carson, on theTonight Show. Like Christian Barnaard, Heimlich was one of the celebrity doctors of the 1960s and 70s; an odd kind of fame, and one which seems to have evaporated. We do not lack for media medics, or doctors-turned-politicians, but a few sports surgeons aside, fame purely on clinical grounds is now unknown.

Heimlich grew up in New Rochelle, New York, overcame the anti-Semitism of the American medical school admission process, and, in January 1945, was drafted as a medical officer to the Sino-American Cooperative Organization, otherwise known as the US Naval Group, China. In Camp Four, at the edge of the Gobi Desert, Heimlich recounts his medical efforts with scant resources and support. He describes improvising a cream to treat trachoma, and is haunted by the death of a soldier whose gunshot-induced chest wound was impossible to drain. This death would inspire his later invention of the flutter valve, his other major medical innovation.

After Camp Four, and his establishment as a surgeon, the book’s focus shifts to medical innovations. Heimlich’s first claimed innovation is the Reversed Gastric Tube Operation, where a tube is created from the stomach to replace a damaged oesophagus. The book is most alive in recounting his innovations and the thought processes that went into them; there are significant gaps in the story between each innovation. While some of the more controversial aspects of his later career – such as an advocacy of malariatherapy for HIV and the removal of the Heimlich manoeuvre from the American Red Cross guidelines for choking – are addressed briefly, the reader would not discover from the book that Heimlich’s own son, Peter, has devoted himself, since 2002, to trying to discredit his father. At the very least, this sturdy, workmanlike account of steady advancement of medical knowledge and uncomplicated life-saving, in the face of opposition from the medical establishment, is not the complete picture.

Cecil Helman died from motor neurone disease in 2009. He was a GP in London, originally from South Africa, and after retiring from clinical practice in 2002 became Professor of Medical Anthropology at Brunel University. In this book, a successor to his Suburban Shaman (2006), Helman continues to advocate listening to the patient and attending to narrative. He repeatedly contrasts ideal practice with various brisk and efficient, and often technologically orientated practitioners. We meet Dr A, “an example of this new breed of doctor – the ones I call ‘techno-doctors’”. Dr A “likes nothing better than to sit in front of a computer screen, hour after hour, peering at it through his horn-rimmed spectacles”. Counterpoised to this is a practice rooted in listening to the patient, and recounting their story.

Each chapter is based on a vignette from clinical practice, related to a concept from the humanities – usually anthropology. For instance, Helman tells us of the pain of a patient which travels across his body, impervious to any intervention and without any discernible physical cause. This pain reminds Helman of the dybbuk, in Jewish folklore the restless soul of a dead person which takes possession of another. He later considers the power of diagnostic labels, the importance of a personal myth and how disease can undermine it, and various other concepts, always related back to his own clinical experience.

Helman’s book is discursive, and readable in the tradition of much medical writing. One suspects that Dr A is something of a straw man, and by putting listening to the patient in opposition to other aspects of practice, I fear that Dr Helman may have been stretching things to make a rhetorical point (surely one can make use of technology in practice, even be something of a “techno-doctor”, and nevertheless put the patient’s story at the heart of practice?) Furthermore, in its own way a recourse to anthropology or literature to “explain” a patient’s story can be as distancing, as intellectualizing, as invoking physiology, biochemistry or the genome. At times the anthropological explanations seem pat, all too convenient – even reductionist.

Nevertheless, there is considerable wisdom here, and one would have no hesitation in recommending this to medical students or doctors in training. In increasingly overloaded medical curricula, where an ever-expanding amount of physiological knowledge vies for attention with fields such as health economics and statistics, the fact that medicine is ultimately an enterprise about a single relationship with one other person – the patient – can get lost. Helman discusses the wounded healer archetype, relating it to the shamanic tradition. He is eloquent on the accumulated impact of so many experiences, even at a professional remove, of disease and death: “as a doctor you can never forget. Over the years you become a palimpsest of thousands of painful, shocking memories, old and new, and they remain with you for as long as you live. Just out of sight, but ready to burst out again at any moment”.

Henry Marsh, recently retired Consultant Neurosurgeon at St George’s Hospital in London, practised a speciality that seems abstruse and mysterious even to other medics. Do No Harm is almost an exemplar of Helman’s palimpsest image. Marsh trod the path from PPE at Oxford to medicine, rather than the Cabinet, and almost accidentally encountered neurosurgery (often not formally taught in medical schools).

Do No Harm is a difficult book to read, not formally or technically – Marsh has a fluid, informal style – but because of the sheer sense of exposure. Puns aside, neurosurgery is at the cutting edge of what it means to be, not only a doctor with limited power to cure or palliate, but to be human. Operations have the potential, even when they seemingly go well, to cause catastrophic effects. As Marsh weighs up the decision to enter the speciality, a neurosurgeon tells him “the operating is the easy part, you know. At my age you realise that the difficulties are all to do with the decision-making”. We accompany Marsh on his post-operative ward rounds, and while at times we read of a recovery and delighted gratitude, more memorable for Marsh and the reader are the times when the worst possible news has to be “broken”.

As a young surgeon, Marsh “lost the simple altruism I had had as a medical student . . . . I became hardened in the way doctors have to become hardened and came to see patients as an entirely separate race from all-important, invulnerable young doctors like myself”. This detachment fades in the later years of practice, and Marsh himself experiences cancer, divorce and the implacable workings of the NHS bureaucracy. This latter force is the subject of some of the most entertaining passages of the book; the world of targets, of endless managerial shell games based on the premiss that mere terminological changes will be enough to transform healthcare, emerges as one divorced from the messy realities of clinical care. The grandiloquent rhetoric about the NHS’s being “the envy of the world” (I’m sorry to inform British readers that the majority of the world doesn’t occupy itself with comparative healthcare enough to feel any such emotion) is also exposed as a continual attempt to plaster over deficiencies in care with words.

With one exception, each chapter is named after a neurological condition (“pituary adenoma”, “neurotmesis” etc) which relates to the clinical vignette around which the chapter is structured. The exception is the chapter entitled “hubris”, and Do No Harm could also profitably be distributed to graduating medical students as a warning against the arrogance so commonly associated with the profession.

We follow Marsh beyond the operating room and the wards. He is part of a National Institute of Clinical Excellence (NICE) technology appraisal, where he wonders “how many of the people sitting round the hollow square [of the meeting room] understood the difficulties and deceptions involved in treating patients who are dying, where the real value of a drug such as this one is hope”. He nevertheless sees these appraisals as important counterbalances to the power of pharmaceutical companies, and is amused that in the US healthcare debates they are seen as “death panels”. Reading a text on the philosophy of mind, he finds himself falling asleep, his conviction that what we are is determined by the clump of neurons that makes up the central nervous system unchanged.

Clearly Henry Heimlich’s account is, at the very least, contested: the use of malariatherapy to treat HIV and of the Heimlich manoeuvre to treat seemingly everything is far from evidence-based practice. In any case, its narrative of medical heroism is one that jars with the honesty and vulnerability displayed by Cecil Helman and, especially, Henry Marsh. The simple idea that doctors themselves are of the same flesh and blood as their patients, a fact often forgotten on both sides of the relationship, is at the core of both Do No Harm and An Amazing Murmur of the Heart. Not all of us are doctors, but all of us – including doctors – can be and will be patients. A wider acceptance of this idea, within the profession and society itself, might aid medicine in healing itself.