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.

 

Review of “Casebook of Psychosomatic Medicine”, Bourgeois et al, IJPM 2011

The above review from the Irish Journal of Psychological Medicine follows on from my review of The Physician As Patient in the same journal. Both books were excellently written, and as time has gone by I appreciate their approach more deeply. As I say in the first paragraph, evidence based medicine and what could be called experience based medicine are often driven into a false dichotomy. Both these books possess wisdom in abundance, and wisdom based medicine is perhaps what we should all be aspiring to practice.  

Helen Pearson, “The Life Project”, Review in TLS 29/03/17

I have a review of Helen Pearson’s “The Life Project” on the UK birth cohort studies in the current TLS. The full article is behind a paywall so here is the preview:

Born to fail

To a non-Briton, the oft-repeated assertion that the NHS is “the envy of the world” can grate. If imitation is the sincerest form of envy, the world’s laggardly adoption of free-at-point-of-use health care is perhaps the truest mark of how much emotional investment the rest of the world really has in the UK’s health system. Early in The Life Project, her book on the British birth cohort studies, Helen Pearson describes them as “the envy of scientists all over the world”. In this case, envy is easier to precisely pinpoint; birth cohort studies have become all the epidemiological and social scientific rage in recent decades, especially around the turn of the millennium. My own daughter, born in 2008, is a member of the Economic and Social Research Institute’s “Growing Up in Ireland” birth cohort.

1946 is the Year Zero of birth cohorts. The low interwar birth rate had caused much…

 

 

A Spoonful of Medicine, Owen Gallagher

Published in 2004 in The Irish Catholic, my only publication there – the literary editor, Peter Costello, is the father of a friend. This is a somewhat sturdy review of an entertainingly straightforward little memoir. Perhaps this piece presaged more recent writings on medical memoirs.

owen-gallager-book

Owen Gallagher
A Spoonful of Medicine: Tales of an Irish Doctor
(Barny Books, Hough On the Hill, Grantham, Lincolshire, £5.99)
Reviewed by Seamus Sweeney

The public have a seemingly inexhaustible appetite for medicine, as can be seen in the TV schedules and the bookshops. There are two definite strains in medical drama. One is the hard-nosed likes of ER, or Samuel Shem’s House of God. These revel in the gory, the seamy, the adrenaline-fuelled, the sleep-deprived and the dramatic. The other sorts, as exemplified by The Royal, are exercises in gentle nostalgia and anecdote. A Spoonful of Medicine, Dr Owen Gallagher’s memoir of his time as a junior doctor, tends more towards the latter school, although it avoids sentimentality and cheap nostalgia.

This book is a collection of stories from Dr Gallagher’s years as a recent medical graduate in the late 60s and early 70s, particularly in accident and emergency, in paediatrics and in psychiatry.
Some anecdotes bear the hallmarks of much polishing over the years, and certainly some of the dialogue is rather unbelievable, with the characters coming out with perfectly grammatical paragraphs and overly pat witty repartee. There are several lapses on the part of the sub-editors, which lead to distracting typos and occasional confusion as to what precisely is happening on occasion.

However, these seem rather churlish caveats about what is a warm-hearted, entertaining book. The stories, while comic and sharply observed, are never cruel and Gallagher’s compassion comes through without ever becoming sanctimonious. Particularly in the final series of stories from his time in psychiatry, we sense his admiration and respect for certain of his patients’ bravery and approach to life.

It was a far different Ireland then, and it was also a far different medical practice. Certainly its impossible to conceive a character like Dr Moore, protagonist of one of the most memorable sections, being produced by today’s medical schools. Dr Moore was a GP whose practice revolved around the schedules of the racetrack rather than any notion of patient convenience. Moore had honed his system until the least possible amount of time was spent with the patients, with anything at all worrying referred to accident and emergency post haste. Dr Gallagher, working in the nearby A&E, bore the brunt of this extra work.

One patient recalled Moore completely ignoring his complaints, preferring to listen to the radio broadcast of a horse race, and then telling him to get himself down to the pub for a couple of pints and a few cigarettes, as “your complaint is mainly in your head, anyway.” Moore never asked a patient to undress, and would listen with his stethoscope over even the heaviest clothing. It may come as no surprise that his patients were all very fond of Dr Moore, who never kept case notes as he knew all the patients from living in the same community as them. Dr. Gallagher too came to appreciate his more endearing qualities.

It certainly is a long way from that to the obsession with targets and mission statements that marks modern health services. This book is not a sociological tract and it would be unfair to expect a deep analysis of the relative pros and cons of the health system, or indeed society as a whole, then and now. There is however a sense of loss at the passing of a certain pace of life and a certain approach to social interaction. Modern practice seems much more rushed and impersonal.

The book could also have been subtitled “what they don’t teach you in medical school.” If the book has a “moral”, it is that much of the education in human nature that makes a good doctor takes place far from the lecture hall or library. It is an enjoyable account of how one doctor acquired that education.

A Natural History of Families. Scott Forbes. TLS January 2006

I would agree with Scott Forbes that any attempt to explain social behaviour without any reference to a Darwinian framework is futile. However using nothing but a Darwinian framework is also unsatisfactory, and as the closing paragraphs of this review make clear, evolutionary psychology’s tendency to just-so stories is something I have always found suspect (I recall reading a very unconvincing paper on experimental methods in some area of evolutionary psychology which I must dig up) . The Huxley quote “in every hedge & every copse battle murder & sudden death are the order of the day” seems germane to some of my recent maunderings on nature writing.

“We are not mice” – slightly too cute as a summing up line. We are biological entities, with our location in the animal kingdom in a phylogeny of our own making and probably masking the continuum nature of species. We are animals, but are we “just” animals?

Again, thanks to Maren Meinhardt for providing me with the published text.

 

A NATURAL HISTORY OF FAMILIES. Scott Forbes. 228pp. Princeton University Press.

Pounds 17.95 (US $27.95). – 0 691 09482 9.

You see a meadow rich in flower & foliage and your memory rests upon it as an image of peaceful beauty. It is a delusion . . . . not a moment passes in that holocaust, in every hedge & every copse battle murder & sudden death are the order of the day.

Thus T. H. Huxley punctured a fond illusion that many hold about “nature”.
A Natural History of Families, Scott Forbes’s account of what behavioural ecologists have learned about family dynamics, is concerned with linking this knowledge to an understanding of human family life. Forbes attacks the perceived arrogance of sociologists dismissive of sociobiological insights:

“The perspective that we can explain human behaviour without a Darwinian foundation -still the distorted view of many in the social sciences -is hubris”, he writes, though he acknowledges that “linking animal to human behaviour is no simple task . . . (and) has not yet helped me in resolving the seemingly endless disputes with my sons”.

In the animal kingdom, parents tend to create more offspring than they can raise to maturity -“parental optimism”. In cases of obligatory brood reduction, at least one offspring invariably dies. For instance, Harpy eagles lay two eggs, and once one has hatched, bury the other. Among Pelicans and Boobies, the first chick to hatch wages a war to the death against the second-born (and therefore smaller) chick. These species practise a form of insurance, reminiscent of the traditional hope for “an heir and a spare”, except with added infanticide. Primogeniture is the human behaviour most obviously similar to the concepts of “core” and “marginal” broods that Forbes discusses. The core brood is the one that survives, while the survival of the marginal is at best a bonus. If something happens to the core, one of the marginal offspring can be promoted and then have a much greater chance of survival.

Infanticide and siblicide may seem, at first, wilful behaviours from an evolutionary point of view. Darwin himself wrote, in The Descent of Man, that “the instincts of the lower animals are never so perverted as to lead them regularly to destroy their own offspring”. Here Darwin nodded, according to Forbes, and both sentimentality and a failure to recognize the true nature of genetic conflict still blind us. Genetic conflict does not occur only between organisms but within organisms. Many phenomena of human pregnancy -for instance, morning sickness, pre-eclampsia and gestational diabetes -Forbes describes in terms of genetic conflict between mother and fetus, or even between the fetus’s own paternal and maternal genetic inheritances.

An astonishing number of human pregnancies are spontaneously terminated, usually before the mother is aware that she may be pregnant. The figure rises from 50 per cent at age twenty-five to 96 per cent at forty. Forbes describes evolutionary reasons for these phenomena, with mothers “screening” their offspring before continuing with pregnancy. Furthermore, many more multiple conceptions occur than multiple births. Forbes suggests that the “vanishing twin” phenomenon is analogous to the brood-reduction phenomena seen more clearly in other animals.

Forbes’s writing is lively and generally clear, though at times rather irritatingly jocular (one tires of references to “mom and dad”). He explains evolutionary theory lucidly and well, though not perhaps clearly enough for an absolute beginner. Some may find that, while his opening chapter uses many examples from the animal kingdom, his later ones lean rather heavily on a more abstract discussion of genetic and evolutionary theory. However, Forbes is good at explaining the subtlety and frequent counter-intuitiveness of current thinking on these topics.

While Darwin is surely essential to an understanding of the complexities of family life, there is more to human family behaviour than primogeniture and infanticide. As with many who seek to apply Darwinian frames to human behaviour, Forbes makes the no doubt true observation that revulsion at the infanticidal practices of the Spartans, and the general sentimentality of the “family myth”, are a consequence of insulation from the rougher aspects of existence. But what does this self-insulation -which seems to be unique to our species -tell us?

Male mice routinely kill off offspring that are not their own. Female mice spontaneously abort unborn pups on smelling a strange male during pregnancy. As is well known, infanticide and abuse of all kinds are more commonly perpetrated by step-parents than genetic parents. But “more commonly” does not mean “commonly”.

We are not mice. Scott Forbes, thankfully, is well aware of this fact.

One In Three: A son’s journey into the history and science of cancer. Adam Wishart. TLS Sept 2006

 

Another ten years on (nearly) piece. I was very impressed with this book at the time. Tje tone and tenor of David Adam’s “The Man Who Couldn’t Stop”  , which I also reviewed for the TLS  and will post here at some point, reminded me of this a lot.

Re-reading the review I am struck by Adam Wishart‘s criticism of medical “detachment” (or what I report here as such) and perhaps will re-read the book itself to explore this more. Also struck (again) by the failure of the War On Cancer and the denigration of basic research which it involved, again as described by Wishart. I would like to read more about this and perhaps read other sources – certainly if Wishart’s account is at all accurate (which I have no reason to doubt) it  teaches us something important about grandiose research agendas. Again thanks to Maren Meinhardt at the TLS for providing me with the published text!

 

For my father
Seamus Sweeney
Published: 22 September 2006
ONE IN THREE. A son’s journey into the history and science of cancer. By Adam Wishart. 312pp. Profile. Pounds 15. – 1 86197 752 2.

When Adam Wishart’s father was diagnosed with the cancer that would kill him, he found that no book on the disease was available that father and son could “read and then discuss”. Initially this seems scarcely credible -there are a huge number of books about cancer but in Wishart’s words:

there were memoirs of celebrities who had “battled” through the disease . . . self-help guides that presented basic information but provided no wider context . . . books that described the science in detail, but they didn’t seem to connect to the experience of being a patient . . . academic histories that did not seem to bring the past alive.

The Wisharts were looking for something different. One in Three begins with the six-year-old Wishart clinging “to my Dad’s enormous hand”. They are striding through London on their way to Broad Street to look at its famous pump. John Snow, in the well-known anecdote, removed its handle, so ending the cholera epidemic of 1854. This is Wishart’s first memory of his father’s quest to educate him, a quest that directly leads to this book.

Recognizing that the Broad Street story is “a rather mythologized and child-friendly version of history”, he describes other stories of scientists and scientific progress with which his father regaled him. “For two men who never spoke about their feelings, our intimacy consisted in sharing our interests in politics, history or the progress of science.” Intellectual discovery seems to have been the substitute for emotional revelation between father and son, and One in Three is part of that process.

It is an account of medical progress and the rejection of “the false ideas of the Ancients”. Wishart’s aim is didactic: “we will all be touched (by cancer), in some way. And I have learnt that an amalgam of fear, archaic prejudices and ignorance is no way to deal with it”. Among the “archaic prejudices”, he particularly despises the Galenic idea of “humours” contributing to the disease, which is echoed in the still prevalent idea that certain temperaments are more prone to it than others; according to the doctor in Auden’s “Miss Gee”: “Childless women get it. And men when they retire; / It’s as if there had to be some outlet / For their foiled creative fire”. Nor has Wishart time for Galen’s prescription of a formal and authoritative bedside manner for doctors -“a mode of behaviour which continues to be enacted in many consulting rooms”.

From this Galenic precept, he traces the now much less prevalent but still extant medical “detachment” that can seem like callousness to a terrified, vulnerable patient.

Each chapter deals with a theme -for instance, surgery, or chemotherapy, or the rise of alternative cancer care, as well as stages of Wishart’s father’s illness, considered either directly, or through the mood of the family. So the chapter on surgery discusses Lister and Billroth along with Wishart Senior’s own experience of surgery, while that on alternative therapy discusses Penny Brohn’s disillusionment with her treatment and the foundation of the Bristol Cancer Care in the 1970s, together with the Wisharts’ occasional anger and doubts.

Wishart has an eye for what Yeats called “character isolated by a deed”, the incident that exemplifies a certain trend or moment in cancer care, or helps us to understand the personality of the cancer researchers. Many of the names in cancer treatment -Sidney Farber, Robert Weinberg, even Marie Curie -are familiar simply as names. Wishart brings these complex, driven figures to life, and it is a life that barely relates to the image of dedicated scientists piously labouring for the good of humanity. For instance, Farber’s development of a chemotherapeutic agent for acute lymphoblastic leukaemia is a story of dogged determination against discouraging clinical results -which in this context means dead children -and the opposition of junior doctors alarmed by his apparently cruel experiments and aloof, Galenic manner.

Among the most memorable characters are two formidable women -Mary Lasker and Penny Brohn, both of whom confronted the cancer establishment with apparent enormous success. Indomitable, passionate, endlessly energetic, Lasker expertly played the social and political worlds of New York and Washington to persuade President Nixon to launch his “War on Cancer”. She was contemptuous of the medical establishment’s insistence that funding should be confined to basic research rather than spent on the “moon shot” approach for a total cure (involving a massive federally funded project with a single big-picture aim, along the lines of the Apollo programme). Brohn, meanwhile, after a particularly bloody biopsy, appalled by the offhand manner of her treating doctors, became convinced that her tumour was the result of “an accumulation of un-discharged grief, pent-up guilt and layer upon layer of fear”, and this conviction prompted her to found the pioneering Bristol centre. Here care was homely and comforting. Even if an insistence on coffee enemas was unpopular, the antithetical approach to Galenic medical authoritarianism was not.

Both of these indefatigable women had equivocal legacies -towards the end of her life, Lasker admitted that basic research behind genetic manipulation, on which she would earlier have poured scorn, was far more promising than the grandiloquent “moon shot” approach. The alternative therapy movement was in one sense a reaction to the hubris of the “War on Cancer”, but often became far more dogmatic and promised far more than mainstream treatment. The medical profession learnt much from its 1970s critics, and duly became more empathetic. The Bristol centre is still operational, but is now complementary with medical oncology.

Wishart combines the story of his father’s illness and death, and medical history, with skill and dignity. Anger and disillusionment are acknowledged, but there are no intemperate judgements of past figures or of contemporary authorities. Indeed, the oly figure who emerges badly is Galen. In his final chapter, Wishart imaginatively reconstructs the possible series of events at a genetic and cellular level that led to his father’s tumour. This speculative passage, reminiscent of the chapter on carbon in Primo Levi’s The Periodic Table, leads to an epilogue focused on future tactics. As well as possible improvements in public health strategies, Wishart calls for “a thoroughgoing change in taboo-shrouded attitudes, a rejection of opinion rooted in the past, in Galen’s physiological melancholy or in Victorian fear of the incurable. And there has to be a reorientation away from the heady optimism that cancer can be cured, and its flipside that a failure to discover the ‘magic bullet’ is a tragedy for humanity”. As well as admirably filling the gap that the Wisharts identified for an intelligent and humane account of cancer, this wise, dignified book will contribute to a rejection of unsatisfactory theories and practices and the adoption of something better.