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.

 

Engaging clinicians and the evidence for informatics innovations

A few weeks ago Richard Gibson from Gartner spoke to members of the CCIO group. It was a fascinating, wide-ranging talk – managing the time effectively was a challenge. Dr Gibson talked about the implications for acute care and long term care of technological innovations – as might be obvious from my previous post here, I have a concern that much of the focus on empowerment via wearables and consumer technology misses the point that the vast bulk of healthcare is acute care and long term care. As Dr Gibson pointed out, at the rate things are going healthcare will be the only economic, social, indeed human activity in years to go

One long term concern I have about connected health approaches is engaging the wide group of clinicians. Groups like the CCIO do a good job (in my experience!) of engaging the already interested, more than likely unabashedly enthusiastic. At the other extreme, there always going to be some resistance to innovation almost on principle. In between, there is a larger group interested but perhaps sceptical.

One occasional response from peers to what I will call “informatics innovations” (to emphasise that this not about ICT but also about care planning and various other approaches that do not depend on “tech” for implementation) is to ask “where is the evidence?” And often this is not a call for empirical studies as such, but for an impossible standard – RCTs!

Now, I advocate for empirical studies of any innovation, and a willingness to admit when things are going wrong based on actual experience rather than theoretical evidence. In education, I strongly support the concept of Best Evidence Medical Education and indeed in following public debates and media coverage about education I personally find it frustrating that there is a sense that educational practice is purely opinion-based.

With innovation, the demand for the kind of RCT based evidence is something of a category error. There is also a wider issue of how “evidence-based” has migrated from healthcare to politics. In Helen Pearson’s Life Project we read how birth cohorts went from ignored, chronically underfunded studies ran by a few eccentrics to celebrated, slightly less underfunded, flagship projects of British epidemiology and sociology. Since the 1990s, they have enjoyed a policy vogue in tandem with a political emphasis on “evidence-based policy.” My own thought on this is that it is one thing to have an evidence base for a specific therapy in medical practice, quite another for a specific intervention in society itself.

I am also reminded of a passage in the closing chapters of Donald Berwick’s Escape Fire (I don’t have a copy of the book to hand so bear with me) which essentially consists of a dialogue between a younger, reforming doctor and an older, traditionally focused doctor. Somewhat in the manner of the Socratic dialogues in which (despite the meaning ascribed now to “Socratic”) Socrates turns out to be correct and his interlocutors wrong, the younger doctor has ready counters for the grumpy arguments of the older one. That is until towards the very end, when in a heartfelt speech the older doctor reveals his concerns not only about the changes of practice but what they mean for their own patients. It is easy to get into a false dichotomy between doctors open to change and those closed to change; often what can be perceived by eager reformers as resistance to change is based on legitimate concern about patient care. There are also concerns about an impersonal approach to medicine. Perhaps ensuring that colleagues know, to as robust a level as innovation allows, that patient care will be improved, is one way through this impasse.