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.