“Development is always going to destabilize a fragile balance of social forces.”

Via the work of John Adams, I have had some familiarity with the Douglas-Wildavsky Cultural Theory of Risk. Like this reviewer, I find the Douglas/Wildavksy treatment of environmentalism rather crude, while their overall cultural typology of risk stimulating. As the reviewer points out:

Most readers will be struck not by the abstract theory but by its application
to the rise of environmentalism. This emphasis is unfortunate. The
attempt to “explain” environmentalism makes a few good points, but on
the whole this part of the book is crude, shortsighted, and snide.3 On the
other hand, the sections that consider the relationship between risk and
culture on a more fundamental level are sensitive and thoughtful.
Even at its best, Risk and Culture is not entirely successful at explaining
the paradox of risk-the problem of managing the unknown-but
parts of the book deserve to be read seriously by people interested in the
problem of risk, including environmental lawyers.

 

9781446254677

I am now reading Mary Douglas directly, in currently her Culture and Crises.: Understanding Risk and Resolution  Although she has a prose style that sometimes grates, and I am wary of possibly being unaware of technical anthropological issues that may be taken-for-granted, there is much to enjoy and think about.

Here is a brief quote from one essay – Traditional Culture, Let’s Here No More About It, which follows a passage about the occasional pitting against each other of development and “traditional culture” (usually, under western eyes, to the detriment of traditional culture):

Development is always going to destabilise a fragile balance of social forces. The people are understandably reluctant to do the gruelling hard work and accept the diversion of resources if the resulting prosperity will only line the pockets of outsiders. Furthermore, if it going to erode the community’s accumulated store of trust, and dissolve their traditional readiness to collaborate, the well-being of the community may be worse after development than before. There certainly is inherent ambiguity about the moral case. At least we can say that what stops development is not cultural traditionalism so much as the way it arrives, how it is organised.

This applies – in spades – to the many many “cultural change” / “transformation” etc projects that health services become the subject of. The suspicion that sacrifice and hard work on the part of staff will benefit only a narrow few (the Minister getting good headlines, various outside consultancies, higher management) surely underlies some at least of the cynicism about such projects that is undoubtedly prevalent.

 

#OceanOptimism, powerlessness, hope, and change.

The current BBC Wildlife Magazine has a fascinating article by Elin Kelsey, of the Ocean Optimism Project, on how media-fuelled environmental despair and nihilism ends up demoralising people to the degree that positive action seems impossible. She cites much research on the “finite pool of worry” and the paralysing effect of despair, and the power optimism to reverse this trend. The article isn’t available online, but in the post below from my other blog I highlight relevant passages from a Kelsey piece in Smithsonian Magazine on similar themes.

This article is obviously focused on ecology, but is all too true of our healthcare systems. For similar reasons to those Kelsey ascribes to environmentalists who are wary of being overly focused on good news, frontline workers in the health service naturally tend to focus on what is wrong, what is proving impossible, what needs to change. This is necessary, but can become an overwhelming counsel of nihilism, fostering cynicism and very often helping to entrench negative practices.

This is very relevant to the various themes on valuesmorale, “blame culture”, and possibility of positive change within not only the HSE but any healthcare organisation.

Séamus Sweeney

The current issue of BBC Wildlife Magazinehas a fascinating cover story by Elin Kelseyon hope and optimism versus despair in how we think about they environment. Essentially, much media discourse on the environment tends to be gloomy, doom, and generally despairing. Kelsey cites a wide range of research on how this negativity effects how we think about the environment and our beliefs about what can be done – and therefore what is done – to improve things. The full article is not available online. This article from Smithsonian Magazine is briefer, but captures her idea:

Things are far more resilient than I ever imagined. Me, green sea turtles, coral reefs blown to bits by atomic bombs. In a twist of fate that even surprised scientists, Bikini Atoll, site of one of the world’s biggest nuclear explosions, is now a scuba diver’s paradise. Bikini Atoll located in the Pacific’s…

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Hype, The Life Study and trying to do too much

A while back I reviewed Helen Pearson’s, “The Life Project” in the TLS. I had previously blogged on the perils of trying to do too much and mission creep and overload.

From the original draft of the review (published version differed slightly):

Pearson is laudably clear that the story of the birth cohorts is also a study of failure; the failure of the NHS to improve the inequality of health incomes between social classes, the failure of educational reforms and re-reforms to broach the similar academic achievement gap. Indeed, the book culminates in a failure which introduces a darker tone to the story of the birth cohort studies.

Launched in January 2015, the Life Study was supposed to follow 80,000 babies born in 2015 and intended to be a birth cohort for the “Olympic Children.” It had a government patron in David Willetts, who departure from politics in May 2015 perhaps set the stage for its collapse. Overstuffed antenatal clinics and a lack of health visitors meant that the Life Study’s participants would have to self-select. The optimistic scenario has 16,000 women signing up in the first eighteen months; in the first six months, 249 women did. By October 2015, just as Pearson was completing five years of work on this book, the study had officially been abandoned.

Along with the cancellation of the National Institute for Health’s National Children’s Study in December 2014, this made it clear that birth cohorts have been victims of their own success. An understandable tendency to include as much potentially useful information as possible seemed to have created massive, and ultimately unworkable cohorts. The Life Study would have generated vast data sets: “80,000 babies, warehouses of stool samples of placentas, gigabytes of video clips, several hundred thousand questionnaires and much more” (the history of the 1982 study repeated itself, perhaps.) Then there is the recruitment issue. Pregnant women volunteering for the Life Study would “travel to special recruitment centres set up for the study and then spend two hours there, answering questions and giving their samples of urine and blood.” Perhaps the surprise is that 249 pregnant women actually did volunteer for this.

Pearson’s book illustrates how tempting mission creep is. She recounts how birth cohorts went from obscure beginnings to official neglect with perpetual funding issues to suddenly becoming a crown jewel of British research. Indeed, as I observe in the review, while relatively few countries  have emulated the NHS’ structure and funding model, very many have tried to get on the birth cohort train.

This situation of an understandable enthusiasm and sudden fascination has parallels across health services and research. It is particularly a risk in eHealth and connected health, especially as the systems are inherently complex, and there is a great deal of fashionability to using technology more effectively in healthcare. It is one of those mom-and-apple-pie things, a god term, that can shut down critical thinking at times.

Megaprojects are seductive also in an age where the politics of funding research loom large. The big, “transformative” projects can squeeze out the less ambitious, less hype-y, more human-scale approaches. It can be another version of the Big Man theory of leadership.

Whatever we do, it is made up of a collection of tiny, often implicit actions, attitudes, near-reflexes, and is embedded in some kind of system beyond ourselves that is ultimately made up of other people performing and enacting a collection of tiny, often implicit actions, attitudes, and near-reflexes.

 

“Blame Culture” in the Irish Healthcare System – another ARCH blog post

Another excellent blog post on the ARCH website, this time by Dr Marcella McGovern, on the blame culture of the Irish health system. The trigger for this article was the recent controversy on “hidden waiting lists.” This led to a rather predictable response from the current Minister for Health:

The Minister for Health, Simon Harris, responded to this programme by saying that he “intends to shine a light” on management in the Irish Health Service Executive (HSE) and that if management does not “measure up”, they will be removed from their roles.

 

Tough talk, but as Dr McGovern writes:

 it fails to acknowledge the Government’s responsibility for that problem. Governance, performance oversight and holding the HSE to account for the implementation of national health policy are key functions that the Minister for Health and his Department are responsible for performing on an ongoing basis; not in response to a crisis. The question put to Ministers for Health in a crisis therefore, should be where in your Department’s oversight of the HSE did you fail to detect this problem and what steps are you taking to correct the problem and ensure that it doesn’t happen again?

 

Of course, this is hardly new:

Paul Cullen highlighted in an analysis piece in the Irish Times (Irish Times, 11th February 2017) that Minister Harris’ predecessor, Leo Varadkar, similarly promised that “heads will roll” over hospital overcrowding. Yet, this winter again saw overcrowded Accident & Emergency Departments resulting in planned inpatient and outpatient appointments being postponed.  The back-log of these postponed appointments are now contributing to the current crisis over long waiting lists, illustrating that unjustifiably “blaming the bureaucrats” (Dubnick, 1996) has knock on effects.

 

Dr McGovern uses the work of Dubnick on “prejudical blame culture” as a framework for her piece:

Three major conditions (for defining prejudical blame culture):
1. It makes no requirement that the blamed person or collection of persons have assumed responsibility for the condition they are blamed for; rather, it targets an ill-defined but inclusive group that everyone knows to exist (e.g. bureaucrats);

2. It doesn’t require any role for the blamed in contributing to the cause of the blameworthy or harmful condition. It is assumed that the vaguely defined ‘they’ are highly influential in shaping the world;

3. [It] eliminates the need for any degree of specificity regarding what the harmful condition entails. It could be the decline of the economy, or the loss of national prestige, or the general malaise of society. (Dubnick, 1996: 22).

Dr McGovern’s work, in the ARCH context, is on the effect on system readiness for innovation. Of course, blame culture has a much wider impact, paralysing innovations beyond the technological sphere:

From a Connected Health perspective, there is a danger that a blame culture demonstrated at the highest levels of the Irish health system will have a trickle-down effect, compromising system readiness for innovation. If the Department of Health blame the HSE for poor management and the HSE blame the Department of Health for inadequate resources, and if clinicians blame managers for excessive bureaucracy and managers blame clinicians for resisting change; organisational trust may be lost in the battles between “us” and “them” (Firth-Cozen, 2004). Within such environments, potentially transformative leaders and early adopters behave cautiously and become reluctant to take “ownership” of innovations (Heitmueller et al. 2016), which by their nature carry the risk of failure and unintended consequences (Ash et al. 2004).

 

 

Post for CCIO blog 20/02/17 – The “technodoctor” and putting stories at the heart of healthcare

Here is a post on the CCIO blog which I guess crystallises some of the thoughts I have posted here inspired by Cecil Helman. So this marks a culmination of sorts of engagement with his work.

The “technodoctor” and putting stories at the heart of healthcare

Cecil Helman was a South African-born GP who died in 2009 of motor neurone disease. He was also an anthropologist whose textbook, Culture, Health and Illness, remains a key reference and teaching text for medical anthropology. His approach to medicine, and life, is summed up in the words of one of his obituaries:

For Cecil literature and art were as important as the science of medicine. He was fascinated by people, their cultural and ethnic backgrounds, the narratives of their illnesses, their interaction with practitioners, and the role of traditional healers in many different societies. As he said, to be an effective healer, a doctor needs to ‘understand the storyteller as well as the story’.

Cecil_HelmanWhile his academic works have had a major influence on healthcare education and training, his most popular book was 2006’s Suburban Shaman a “mosaic of memories” of storytellers/patients and their stories, informed by his anthropological knowledge and approach. A posthumous sequel, An Amazing Murmur of the Heart, is a sort of sequel, in which Helman discusses the often-dehumanising process of medical education, during which the patient becomes something denatured, disconnected from their narrative. And in this book Helman identifies a new kind of doctor – the “technodoctor”:

Young Dr A, keen and intelligent, is an example of a new breed of doctor – the ones I call ‘techno-doctors’. He is an avid computer fan, as well as a physician. He likes nothing better than to sit in front of his computer screen, hour after hour, peering at it through his horn-rimmed spectacles, tap-tapping away at his keyboard. It’s a magic machine, for it contains within itself its own small, finite, rectangular world, a brightly coloured abstract landscape of signs and symbols. It seems to be a world that is much easier for Dr A to understand , and much easier for him to control, than the real world –  one largely without ambiguity and emotion.

Helman further identifies that this attitude marks a further step along the road of reductionism and dehumanising in medical care:

Like many 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 was reminded by Robert Wachter’s speech at the 2016 CCIO Network Summer School in Leeds, on unintended consequences in health IT. He gave the example of hospitals where doctors are no longer to be found on the wards interacting with patients and other staff, but in a room full of doctors on computers, interacting with the EHR. The most stark illustration he used, however, was a child’s picture of a visit to the doctor, showing the doctor’s back turned to the child and her mother, tap-tapping away at the screen.

“A body that has become pure information” is how Helman describes the end process of the dehumanisation he decries. While I think the “technodoctor” is something of a straw man, Helman is certainly pointing to a genuine risk. “An Amazing Murmur of the Heart” is full of wisdom about the importance of connection, of physical touch, of attending to the story the patient brings, and the meaning of their symptoms for them. It would be a pity if this kind of rich, truly humanistic approach to medicine is somehow placed in opposition to the world of the “technodoctor.”

One way of avoiding the development of this false dichotomy into something tangible lies in Helman’s emphasis on the need to “understand the storyteller as well as the story.” What Helman doesn’t discuss in these passages is how paper-based information systems in healthcare can obscure the story and the storyteller in a welter of disjointed confusion. My own experience of paper notes is all too often wading through pages of confusing, if not illegible, notes, searching for something typewritten or printed. In this circumstance, the story the person is bringing to the encounter is utterly lost.

Initiatives like the EHR Personas allow for the conscientious, judicious use of narratives in planning and executing a major health IT change, one that could radically alter not only how healthcare is delivered but also how the personal story that is at the heart of all this activity is told.

Helman is, from the grave, issuing a warning, however, about what could go wrong. It is the same warning as that Bob Wachter gives with the child’s picture. It is fortunate that “narrative medicine” has become an academic subject in its own right, although perhaps this development indicates that something has been lost. In planning health IT interventions, we must ensure that they allow the story to be told and the storyteller to be heard. Let us focus on ensuring that the human stories that are the real stuff of every single clinical encounter are never lost, and that we turn our faces not to the screen but to those human stories.

#EHRPersonas – blogpost on CCIO site

Here is a post on the CCIO website on the recent EHR Personas workshop organised by eHealthIreland:

 

The HSE’s Chief Information Officer and the Clinical Strategy and Programmes Directorate are currently developing ‘Personas’ and ‘Scenarios’ to support the introduction of Electronic Health Records (EHR). As part of this project, a series of workshops for those working in the health services and also patients/service users was held on January 31stand February 1st.

One of the challenges of developing an EHR is capturing the diversity of needs it must address. Even a seemingly straightforward clinical setting will involve multiple interactions with multiple information sources. Contemporary mental health practice is focused on the community, but at the same time acute psychiatric units now co-located in acute general hospitals, and mental health issues very commonly arise simultaneously with general health needs, there is considerable overlap with the hospital system. Mental health services increasingly integrate multiple models of mental health, not only a purely medical one; while simultaneously safe psychiatric practice requires access to laboratory and imaging systems to the same degree as other medical disciplines.

Mental health services are therefore interacting with hugely complex information networks. Capturing all this complexity in a useful form is a considerable challenge. Personas and scenarios allow the expertise of patients and clinicians to be synthesised and for assumptions about what an EHR is for and can do to be challenged.

As a participant in a service provider workshop, I naturally enough was grouped with other mental health professionals. Most of our team were mental health nurses – in the community, delivering therapies and liaising with general hospital staff. We also had representation from pharmacy and administration, and myself as a psychiatrist. Other workshops include the diverse range of health professionals that make up a multidisciplinary community mental health team.
The service user persona was Tom, a 19 year old student from Mayo who has recently started university in Dublin. Tom’s friends notice he is more withdrawn and generally “not himself” and are sufficiently concerned to persuade him to attend the college health services where he sees a GP. There a physical examination, blood work and a urine drug screen are performed. A referral is made via HealthLink to a community mental health team. However a couple of nights later Tom becomes much more distressed and tells his friends he needs to escape from black-coated men following him everywhere. Tom’s friends bring him to the local Emergency Department where he is medically assessed and referred for a psychiatric opinion.

The scenario attempted to address how an EHR would address multiple issues that effect current mental health practice – from communication between primary care and mental health services to the avoiding duplication of investigations and of questioning.

One of the most persistent items of feedback from mental health service users is the initial contact with services involving much repetition of the same questions – often including biographical and demographic data – at a time of distress and anxiety.There is also frequently repetition of investigations and physical examinations, even when these have already been performed.

In our scenario, the situation developed with Tom deciding to move back home to Mayo and re-presenting to his local GP. This brought up a whole range of issues around the interaction between primary care, student health services, the mental health services across different catchment areas and regions. In our group, we discussed how the issue of access to the National Shared Record could play out with various permutations of consent from Tom, and the impact this could have on his care.

The second persona focused on a community mental health nurse, Ann, on her daily routine of calling to service users across a geographically dispersed mixed urban/rural area, engaging with clients at various stages of recovery, and administering treatments such as depot injections of antipsychotic medication and centrally dispensed medication such as clozapine. In our scenario we introduced features typical of remote working in an environment where mobile connections are not always reliable. Features such as the ability to work offline and upload updated records when back online were discussed.

In both service user and clinician scenarios, it became clear that if technology is to improve how health systems work for the benefit of the patient, it is in many ways by becoming invisible, by making the clinical interaction frictionless and about the person at its heart. The need for repeated, intrusive and unnecessary investigations – and questioning – could be reduced, allowing therapeutic interactions to take place unhindered. Both personas, and both scenarios, reinforced for me that the health system must have the service user – such as Tom – at its heart, and the delivery of healthcare is ultimately by people – such as Ann.

At its best, technology can enable this ultimately deeply personal interaction, rather than acting as another barrier, another “system” to be navigated.

#flicishere, the #IoT and invisible health IT

#flicishere, the #IoT and invisible health IT

 

#Hereisflic! Flic is a wireless smart button “for your smartphone, smarthome and smartlife” as the website puts it. While I am rather deficient in the smarthome and smartlife departments, I do have a smartphone and had an enjoyable evening playing around with Flics. A Flic is a little button – the pack above contained 4:

 

Each is a pleasingly solid little artefact. Put very simply, there are three ways of pressing the Flic – single click, double click, and hold. Each of these can be linked with an action of your smartphone (or smarthome devices/system) or using If This, Then That a whole range of other apps and devices:

Playing around with Flic was great fun and had that you-can-do-that? factor which I don’t get all that much with technology any more. Indeed, messing around with Flic got me thinking of grandiose, utopian vision of healthcare (I suspect some of my aversion to grandiose, utopian visions of technology and healthcare is pure reaction formation. And obviously my grandiose, utopian vision is better than everyone else’s grandiose, utopian vision) – which to recap was:

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.

I suppose putting flesh on those bones would involve a speech to text system that would convert the clinical encounter into a summary form “for the notes” (and for a summary letter for the person themselves, and the GP letter, and for the referrals) – perhaps some key phrases would be linked with certain formulations and phrases (to a great degree medical notes, even in psychiatry, are rather formulaic) – with of course capacity or editing and adding in free text. While clicking Flic-type devices during a consultation would be distracting, a set of different Flic type buttons with different clinical actions – ie contact psychologist to request a discussion on this patient, make provisional referral to dietitian, text community nurse to arrange a phone call – would certainly smoothen things much more than the carbon-copy world I currently live in.

When I wrote the above vision I was not familiar with the illustration Bob Wachter uses in his talks of a young girls picture of her trip to the doctor:

childspic

Turned away, tapping at a keyboard, disengaged from the family. That is what technology should not facilitate. Perhaps the internet of things could be a way of realising my particular grandiose vision of invisible Health IT.