The Best Australian Science Writing 2012 (11 page)

So what do you do when you are confronted by an expectation that you practise according to the ‘evidence' – an agreed clinical protocol written up in authoritative, peer-reviewed journals – when that evidence contradicts what you have reason to believe, from your own transdisciplinary knowledge base, is in your patient's best interests? Diverging from accepted best practice is professionally compromising, even dangerous. But not contesting a harmful diagnosis is ethically compromising, dangerous to one's personal integrity and peace of mind, not to mention patient health. I found this cognitive dissonance across a range of issues acutely painful. It seriously compromised my capacity to enjoy general practice. Finally, I took up research – an act of subversion.

But what madness was it to spend my limited free time, over the years, doing searches of the Medline or PubMed or CINAHL databases, poring over papers about my chosen issue: infant crying and GORD? Why did I lock myself away that warm outback Easter, when the kids played with their cousins in the red dirt amid tailings of freshly picked cotton, to read accounts of RCTs and cohort studies in the
Journal of Pediatric Gastroenterology and Nutrition
, or the
Archives of Disease in Childhood
, or the
Journal of Gastroenterology and Hepatology
?

A set of shared assumptions that were implicit and unquestioned screamed at me from the hundreds of papers I read, like babies no one wanted to pick up. First, the research assumed that a clinical sign or problem must result from a disease: the reductionist, ‘biomedical', cause–effect paradigm. Second, the research assumed that certain infant-care practices in our society were biologically normative: that is, they could not impact on
infant behaviour and physiology, and did not need to be taken into account or controlled for in clinical trials. Third, the research assumed that findings in toddlers and children could be generalised to newborns and babies in the first months of life. These assumptions ignored entire disciplines: for example, lactation research exploring the differing effects of formula and breastfeeding on gut physiology, or research in neurology exploring the relationship between the autonomic nervous system and gut physiology, or in ethnopaediatrics exploring cross-cultural differences in infant care, or in developmental psychology exploring the interrelationship between sociocultural factors, parental health and the maturing architecture of the infant brain. Nomenclature in the literature concerning infant GORD was seriously confused, since normal physiological events were interpreted as disease processes; and, due to basic misunderstandings about the way feed-spacing affects the acidity of reflux, the usefulness of the researchers' investigative tools was hopelessly compromised. This all seemed obvious to me, as a generalist, but I was critiquing a powerful and prestigious body of international experts.

In 2004, I applied for funding through the Primary Health Care Research, Education and Development Strategy, which had started in the 1990s as the General Practice Evaluation Program. To date, the PHCRED Research Capacity Building Initiative has been the federal government's main contribution to the development of primary care research, administered by 26 university departments around Australia. A PHCRED Novice Research Fellowship remunerated me for a day a week of research over 12 months.

I published an analysis. The night an email arrived saying my article had been accepted, my husband uncorked a bottle of champagne and toasted me over dinner. ‘Good on you, Mum, we're really proud,' my adolescents chorused, having figured out that this was my equivalent of winning the soccer championship
or playing a violin solo in the school concert. My son raised his glass with so much enthusiasm that his milk spilt.

But my kind of analysis was out of fashion. Nobody was much interested in thinking about clinical problems; they just wanted the results of trials. Now you've got to build on it, my loyal husband said, but I was disheartened. Too many Easters lost, too many novels unread, too many good movies missed. Every time I saw an unsettled baby at work, I felt a jolt of grief.

Finally, once my daughter left home, generous supervisors allowed me to devote one morning a week of my part-time university teaching appointments to research. I began the task of developing an integrated, multidisciplinary, primary care approach to unsettled babies and their mothers. Synthesis of transdisciplinary perspectives is a unique skill of the GP, so I began reviewing the extensive bodies of literature from various disciplines dealing with crying babies. This meant challenging traditional EBM approaches and drawing on innovative new methods that were more appropriate for complex problems. Cross-professional coordination of care is also a unique skill of the GP, so I aimed to network, interview key informants, and develop an integrated multi-disciplinary primary care approach to unsettled babies and their mothers.

Midwives told me that continuity of care from the early antenatal period through delivery to six weeks postpartum would address many problems that result in distressed mothers and babies. Child-health nurses told me that mothers of unsettled babies needed to be able to access their services in the community without long waits. Speech pathologists were concerned that babies with feeding difficulties should be seen before disrupted mother–infant relations entrench; lactation consultants argued that their services should be available promptly and affordably to all new mothers who needed them; occupational therapists and physiotherapists pointed out that irritable infants may have
sensory processing problems, and that sensorimotor integration should be considered. Psychologists and social workers wanted early identification of obstacles to mother–infant bonding and to a baby's healthy psychosocial development. Perinatal psychiatrists warned that early detection of and support for maternal anxiety and depression are vital.

When I presented my preliminary work at a general practice conference, a crusty old GP challenged me from the back of the room. ‘Of course GORD occurs in crying babies from very early on,' he said. ‘You should see the relief on a mother's face after a day or two of PPIs.' I explained that any medication for unsettled babies had a 50 per cent placebo effect. ‘I listen to the mothers,' he replied bluntly. As if I didn't!

But I admired his spunk. He was the type of old-school GP driven crazy by brand EBM, which expected him to treat that mythical standardised patient, who is everybody and nobody. Many GPs felt that EBM, at least until it began to revise itself, devalued the individual needs and autonomy of the patient, and the experience of doctors, in the name of pure ‘evidence'. It's often said that's why GPs don't engage in research, although it might just be that they are simply overwhelmed by patients and bureaucracy, without the kind of income that makes time for unpaid research possible.

‘So many unsettled babies are still on PPIs,' mused a cheerful, firmly spoken social worker from a large children's hospital down south, a woman about my own age whom I had met at an infant sleep roundtable the previous year. ‘I thought we put a stop to that!' Shortly after my first paper came out, she'd published a landmark study with a bunch of paediatric gastroenterologists and paediatricians showing that anti-reflux medications had the same effect as placebo in crying babies. Their widely cited RCT marked the peak of GORD in unsettled infants. But an RCT also side-stepped the need to think about why the epidemic had
taken hold. I worried that if we didn't think analytically about the GORD epidemic in crying babies, if we didn't critique our theoretical frameworks and mistakes, the same errors would be repeated.

* * * * *

After my presentation at that Queensland conference, an amiable professor suggested a cup of tea at the long table set with urns, fruit platters and scones. I'd met him in 2004 when I first wandered into the Centre of General Practice talking about crying babies. He'd pulled a strange wooden contraption out from among dusty boxes and folders in a basement storeroom and offered it to me. It measured a baby's cry, he explained. He'd invented it as a young father when his own babies screamed inconsolably all night long. In 2004 he was a rising star, one of that handful of lean, bike-riding, surfboarding EBM men who stormed the brand new discipline of general practice research and lifted it out of its lethargic, government-induced preoccupation with surveys. In 2004 he couldn't imagine serious research that didn't measure things. He would stare at me blankly when I used terms like ‘evolutionary biology'. ‘Where's the evidence?' he would ask.

Brand EBM is better suited to the pharmaceutical, surgical and technological interventions of other narrowly focused specialties, though even there, as the GORD epidemic demonstrated, it has its limitations. General practice, however, demands more intellectual rigour of us than just that, since patients come in with complex, multi-dimensional and undifferentiated health problems, affected by many factors, known and unknown, dynamically interacting in that patient's life, environment and social context. From the early 1990s I scrawled web-like diagrams on scraps of paper for my patients: multiple things seem to be
interacting and contributing to this problem, I would say. The problem might be depression, or fibromyalgia. It might be diabetes, or obesity, or chronic fatigue. It might be polycystic ovary syndrome, or tension headaches. It might be unsettled behaviour in a baby.

To my mind, intellectual rigour in general practice research asks us to draw on our unique generalist skills of integration and synthesis, our exposure to trans-disciplinary perspectives, the breadth and depth of our knowledge base, and our familiarity with a patient over time in their socio-cultural and environmental context, in order to think about complex problems. Then the investigative studies we draw on, or instigate, will be useful. Brand EBM is linear. A human being is not.

On the day of the conference, the professor who invented a cry-measuring machine looked up and paused as he stirred a spoonful of sugar into his tea. ‘Why don't you just run a trial of cognitive behavioural therapy for the mothers?' he asked. ‘That's what's needed when babies cry.' But any mother – including his wife, I expect – will tell you it's not so simple.

‘The problem with your research is that you haven't started with an open mind,' another senior research fellow remonstrated, just months ago. ‘You've got your own theories, then you choose evidence to fit them.' Attempts at theoretical framing arouse a kind of moral panic among diehard EBM advocates, as if you are embarrassingly airy-fairy, even intellectually inferior and somehow unfit. A quack. ‘Evidence-based medicine is about the open mind, no preconceptions' – this person made it sound like zen, a pure spirit, a state of true inquiry – ‘and then you rank the existing RCTs according to quality and do a systematic review. That's how you get the answer.'

What could I say? This lack of insight into one's own unconscious theoretical bias was the reason we had an infant GORD epidemic in the first place! And if we don't develop and debate
theoretical frameworks, then we don't know which questions to ask, which ones are most targeted and cost-effective. We pluck research questions out of the air, blindly. Critics argue that EBM, so proud of its ‘pragmatism', remains blissfully unaware of its own implicit theoretical assumptions and is, therefore, unable to engage with criticism rationally. It doesn't know what it doesn't know. Brand EBM is, therefore, a fundamentalism. You believe in it. You don't have to know what other disciplines – for example, the social sciences – are saying about an issue. You can avoid the headaches of complex clinical problems and focus on the simple ones, amenable to straightforward cause-and-effect interventions, which translate into more publications and a successful career. ‘EBM is a very odd approach to knowledge,' confided another professor of primary care research, from down south, ‘and it's influencing policy in worrying ways.'

Then my proposed study won the RACGP Research Foundation's most generous bursary: $20,000 for research costs. I'd written the application over yet another Easter, this time on Stradbroke Island, looking out on the stormy skies and crashing surf at Main Beach, with my daughter and her boyfriend sleeping in and my son down at Cylinder Beach looking for girls. When I won the scholarship, I googled the professor who died so young and bequeathed this fund for those starting out in primary care research. I felt a sudden burden of responsibility to make him proud, to make a difference. He was an EBM man of formidable intelligence and charisma, and I like to think that, if he were still here, he would understand what I'm trying to do.

* * * * *

It would be disingenuous to frame my research into crying babies as a struggle between brand EBM and complexity in primary care, using the same tired old oppositional discourse – though I
confess it has often felt as if it is that. But integrating the mass of digital-age research into unsettled infant behaviour, and generating high-quality information, would not be possible without brand EBM. Every time I search the literature, every time I appraise a study for rigour, every time I look for the highest level of evidence, I benefit from its legacy. Even the form of literature review I have used, meta-narrative mapping, was first formalised in the UK by a feisty professor of general practice, wrestling publicly with both the benefits and the limitations of EBM.

The GORD epidemic is best framed as a by-product of reductionism in medical research, the same reductionism that proved fertile ground for the rise of brand EBM. Reductionism is an extremely useful tool for highly specialised, hospital-based research interests, and the GORD epidemic in unsettled babies can be understood as a hot-headed moment in the youthful discipline of paediatric gastroenterology research that got seriously out of hand. But reductionism alone fails to make sense of the breathtakingly complex, stunningly unpredictable, constantly dynamic problems that a GP in the community encounters in her consulting room every day.