Review: Virtual You

Virtual You: How Building Your Digital Twin Will Revolutionize Medicine and Change Your Life
By Peter Coveney and Roger Highfield
Princeton University Press
ISBN: 978-0-691-22327-8

Probably the quickest way to appreciate how much medicine has changed in a lifetime is to pull out a few episodes of TV medical series over the years: the bloodless 1960s Dr Kildare; the 1980s St Elsewhere, which featured a high-risk early experiment in now-routine cardiac surgery; the growing panoply of machcines and equipment of the 2000s series E.R. (1994-2009). But there are always more improvements to be made, and around 2000, when the human genome was being sequenced, we heard a lot about the promise of personalized medicine it was supposed to bring. Then we learned over time that, as so often with scientific advances, knowing more merely served to show us how much more we *didn’t* know – in the genome’s case, about epigenetics, proteomics, and the microbiome. With some exceptions such as cancers that can be tested for vulnerability to particular drugs, the dream of personalized medicine so far mostly remains just that.

Growing alongside all that have been computer models, mostly famously used for metereology and climate change predictions. As Peter Coveney and Roger Highfield explain in Virtual You, models are expected to play a huge role in medicine, too. The best-known use is in drug development, where modeling can help suggest new candidates. But the use that interests Coveney and Highfield is on the personal level: a digital twin for each of us that can be used to determine the right course of treatment by spotting failures in advance, or help us make better lifestyle choices tailored to our particular genetic makeup.

This is not your typical book of technology hype. Instead, it’s a careful, methodical explanation of the mathematical and scientific basis for how this technology will work and its state of development from math and physics to biology. As they make clear, developing the technology to create these digital twins is a huge undertaking. Each of us is a massively complex ecosystem generating masses of data and governed by masses of variables. Modeling our analog selves requires greater complexity than may even be possible with classical digital computers. Coveney and Highfield explain all this meticulously.

It’s not as clear to me as it is to them that virtual twins are the future of mainstream “retail” medicine, especially if, as they suggest, they will be continually updated as our bodies produce new data. Some aspects will be too cost-effective to ignore; ensuring that the most expensive treatments are directed only to those who can benefit will be a money saver to any health service. But the vast amount of computational power and resources likely required to build and maintain a virtual twin for each individual seem prohibitive for all but billionaires. As in engineering, where virtual twins are used for prototyping or meterology, where simulations have led to better and more detailed forecasts, the primary uses seem likely to be at the “wholesale” level. That still leaves room for plenty of revolution.

The documented life

For various reasons, this week I asked my GP for printed verification of my latest covid booster. They handed me what appears to be a printout of the entire history of my interactions with the practice back to 1997.

I have to say, reading it was a shock. I expected them to have kept records of tests ordered and the results. I didn’t think about them keeping everything I said on the website’s triage form, which they ask you to use when requesting an appointment, treatment, or whatever. Nor did I expect notes beginning “Pt dropped in to ask…”

The record doesn’t, however, show all details of all conversations I’ve had with everyone in the practice. It notes medical interactions, like noting a conversation in which I was advised about various vaccinations. It doesn’t mention that on first acquaintance with the GP to whom I’m assigned I asked her about her attitudes toward medical privacy and alternative treatments such as acupuncture. “Are you interviewing me?” she asked. A little bit, yes.

There are also bits that are wrong or outdated.

I think if you wanted a way to make the privacy case, showing people what’s in modern medical records would go a long way. That said, one of the key problems in current approaches to the issues surrounding mass data collection is that everything is siloed in people’s minds. It’s rare for individuals to look at a medical record and connect it to the habit of mind that continues to produce Google, Meta, Amazon, and an ecosystem of data brokers that keeps getting bigger no matter how many data protection laws we pass. Medical records hit a nerve in an intimate way that purchase histories mostly don’t. Getting the broad mainstream to see the overall picture, where everything connects into giant, highly detailed dossiers on all of us, is hard.

And it shouldn’t be. Because it should be obvious by now that what used to be considered a paranoid view has a lot of reality. Governments aren’t highly motivated to curb commercial companies’ data collecction because that all represents data that can be subpoenaed without the risk of exciting a public debate or having to justify a budget. In the abstract, I don’t care that much who knows what about me. Seeing the data on a printout, though, invites imagining a hostile stranger reading it. Today, that potentially hostile stranger is just some other branch of the NHS, probably someone looking for clues in providing me with medical care. Five or twenty years from now…who knows?

More to the point, who knows what people will think is normal? Thirty years ago, “normal” meant being horrified at the idea of cameras watching everywhere. It meant fingerprints were only taken from criminal suspects. And, to be fair, it meant that governments could intercept people’s phone calls by making a deal with just one legacy giant telephone company (but a lot of people didn’t fully realize that). Today’s kids are growing up thinking of constantly being tracked as normal, I’d like to think that we’re reaching a turning point where what Big Tech and other monopolists have tried to convince is is normal is thoroughly rejected. It’s been a long wait.

I think the real shock in looking at records like this is seeing yourself through someone else’s notes. This is very like the moment in the documentary Erasing David, when the David of the title gets his phone book-sized records from a variety of companies. “What was I angry about on November 2006?” he muses, staring at the note of a moment he had long forgotten but the company hadn’t. I was relieved to see there were no such comments. On the other hand, also missing were a couple of things I distinctly remember asking them to write down.

But don’t get me wrong: I am grateful that someone is keeping these notes besides me. I have medical records! For the first 40 years of my life, doctors routinely refused to show patients any of their medical records. Even when I was leaving the US to move overseas in 1981, my then-doctor refused to give me copies, saying, “There’s nothing there that would be any use to you.” I took that to mean there were things he didn’t want me to see. Or he didn’t want to take the trouble to read through and see that there weren’t. So I have no record of early vaccinations or anything else from those years. At some point I made another attempt and was told the records had been destroyed after seven years. Given that background, the insousiance with which the receptionist printed off a dozen pages of my history and handed it over was a stunning advance in patient rights.

For the last 30-plus years, therefore, I’ve kept my own notes. There isn’t, after checking, anything in the official record that I don’t have. There may, of course, be other notes they don’t share with patients.

Whether for purposes malign (surveillance, control) or benign (service), undocumented lives are increasingly rare. In an ideal world, there’d be a way for me and the medical practice to collaborate to reconcile discrepancies and rectify omissions. The notion of patients controlling their own data is still far from acceptance. That requires a whole new level of trust.

Illustrations: Asclepius, god of medieine, exhibited in the Museum of Epidaurus Theatre (Michael F. Mehnert via Wikimedia).

Wendy M. Grossman is the 2013 winner of the Enigma Award. Her Web site has an extensive archive of her books, articles, and music, and an archive of earlier columns in this series. She is a contributing editor for the Plutopia News Network podcast. Follow on Mastodon