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There are also bits that are wrong or outdated.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
FWIW, California has allowed patients to see their records for many years now. Recently, they added notes that a provider makes (the “pt. dropped in to ask” sort, separate from the summaries of observations, diagnoses and treatments that were required before). Providers also maintain and share lists of every single diagnosis ever made, from dog bites to kidney dysfunctions. My list mentioned a liver disorder, which I never had and no doctor reminded me about, and I should arrange to have it removed.