I remember a time when doing EBM required a trip to the hospital library, because that was the only place with a 6-CD changer that held Medline. Behind the table with The Computer on it was the start of a bank of bookshelves that held the Index Medicus – printed Medline – and enough dust to crisp your skin faster than an infection-control away-day.
The internet has changed all that. EBM is achievable on my phone during ward rounds (if I stand close enough to the window to get 3G), and certainly over coffee. It’s also changed, I think, how our relationship is with parents and young people, and altered the nature of the discourse we engage in.
This week I have talked to a number of families whose children have high risk neuroblastoma. They were asking specific, focussed questions, enquiring about the evidence underlying treatment choices, prognostic markers, adverse events and disease course. Our conversations included references to trial registries (“I saw this trial had been done in 2000, with a tumour vaccine, but there are no results posted”), to the honesty of equipoise, to partial disclosure in pharma trials and the challenges of ascribing adverse events to particular drugs (“When they’re on so many nasty things, and has had so much chemo, you can’t really say which does what and if it’d just be something someone could have picked up anyway”). Parents described the way they viewed information differently, one parent wanting to know tumour necrosis results if it “means something – if it told me about a risk group they fit into”, another only “if it means you can do something different – otherwise what’s the point in knowing it”. They have sought answers regarding previous trials underpinning therapeutic choices, and understand more fully that I ever hope to the possibilities and regrets of alternative actions.
At other times I have been questioned about diagnostic test accuracy; about systematic reviews of aetiological studies; about expected outcomes, averages and ranges. Discussions which demand us as physicians to not rely on rote answers, to clarify the question, to seek and evaluate information and to present that to be considered together. To integrate evidence, clinical expertise, and the patient voice into excellent medical practice.
It’s been noted before, and will be noted again, but this worldwide sharing information really is good.
The internet has changed things.