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.


The perils of trying to do too much: data, the Life Study, and Mission Overload

One interesting moment at the CCIO Network Summer School came in a panel discussion. A speaker was talking about the vast amount of data that can be collected and how impractical this can be. He gave the example of – while acknowledging that he completely understood why this particular data might be interesting – the postcode of  the patients most frequent visitor. As someone pointed out from the audience, the person in the best position to collect this data is probably the patient themselves.

When I heard this discussion, the part of my that still harbours research ambitions thought “that is a very interesting data point.” And working in a mixed urban/rural catchment area, in a service which has experienced unit closures and admission bed centralisation, I thought of how illustrative that would be of the personal experience behind these decisions.

However, the principle that was being stated – that clinical data is that which is generated in clinical activity – seems to be one of the only ways of keeping the potential vast amount of data that could go into an EHR manageable. Recently I have been reading Helen Pearson’s “The Life Project” , a review of which will shortly enough appear. Pearson tells the story of the UK Birth Cohort Studies. Most of this story is an account of these studies surviving against the institutional odds and becoming key cornerstones of British research. Pearson explicitly tries to create a sense of civic pride about these studies, akin to that felt about the NHS and BBC. However, in late 2015 the most recent birth cohort study, the Life Study, was cancelled for sheer lack of volunteers. The reasons for this are complex, and to my mind suggest something changing in British society in general (in the 1946 study it was assumed that mothers would simply comply with the request to participate as a sort of extension of wartime duty) – but one factor was surely the amount of questions to be answered and samples to be given:

But the Life Study aims to distinguish itself, in particular by collecting detailed information on pregnancy and the first year of the children’s lives — a period that is considered crucial in shaping later development.

The scientists plan to squirrel away freezer-fulls of tissue samples, including urine, blood, faeces and pieces of placenta, as well as reams of data, ranging from parents’ income to records of their mobile-phone use and videos of the babies interacting with their parents. (from Feb 2015 article in Nature by Pearson)

All very worthy, but it seems to me that the birth cohort studies were victims of their own success. Pearson describes that, almost from the start, they were torn between a more medical outlook and a more sociological outlook. Often this tension was fruitful, but in the case of Life Study it seems to have led to a Mission Overload.

I have often felt that there is a commonality of interest between the Health IT community, the research methodology community, and the medical education community and the potential of EHRs for epidemiology research, dissemination of best evidence at point of care  and realistic “virtual patient” construction is vast. I will come back to these areas of commonality again. However, there is also a need to remember the different ways a clinician, an IT professional, an epidemiologist, an administrator, and an educationalist might look at data. The Life Study perhaps serves as a warning.