How do I compellingly advocate for my privacy with doctors and other healthcare professionals?

mnalis:

That is exactly my point (which I tried to emphasize with that XKCD comic): you’re not asking for basic answers. You’re asking extremely complex questions , which require in-depth technical IT knowledge, which the receptionist is highly unlikely to have at hand without consulting their IT (which, as you seem to say, does not exist).

Thank you for your very comprehensive feedback. I sincerely appreciate how you are breaking it down. Although you make very valid points, I still somewhat disagree.

I am not an expert. I am just a regular person who likes to learn about privacy issues because it’s an issue I care deeply about. I do not have the advanced technical knowledge that you seem to clearly have. You have used numerous technical terms that I am not familiar with, which is the jargon I was referring to.

I can understand why someone who is as knowledgeable as you would expect more technical answers that are very IT-centric. However, when you look at the growing knowledge of privacy expertise, you notice that there is a rich and wide tapestry of experts who come from different fields, not just IT.

Shoshanna Zuboff (Surveillance Capitalism) is a social psychologist and philosopher. Carissa Véliz is also a philosopher. Glenn Greenwald , who helped Edward Snowden , is a political journalist and former lawyer. Loira Poitras , who also told Snowden’s story, is a documentary filmmaker. Cory Doctorow is a journalist , activist , and science fiction writer. Although some of these people have strong IT knowledge (Doctorow), most of them don’t.

When you read Véliz’s book, she doesn’t talk much about IT, although of course it is mentioned. And yet we understand the privacy issues she raises. She has the rare talent that not experts have to be able to explain privacy issues in layman’s terms.

Maybe I am wrong, but this is the kind of answer I expect from my doctor and her receptionist:

The law says X which means we don’t share your data with any unauthorized third parties. The third-party tools we use are X, Y, and Z , and most are E2EE which means they are unable to read it. All the third-party tools we use and organizations we liaise with are bound by law to protect your confidentiality.

mnalis:

I’m just trying to outline why you seem to be getting confused looks from the receptionist.

I can appreciate that many healthcare workers do not know the answer to this question and hence are taken off guard. But to me, that is an indictment of the state of affairs because they should have some knowledge or, at the very least, refer me to a person they know and work with who can answer this question. Every job has parts of it we don’t like that we must have some competence in.

I asked my question in person the day of my appointment. But I could have asked it days or weeks before via email, and I suspect their answer would have been just as weak despite having the time to formulate a good response.

mnalis:

But asking “Is electricity provided by TN-C, TT, or TN-S system, and is the bathroom water heater shock-protection provided by double-isolation, bootleg ground or RCD (and if RCD, at which leakage current threshold in mA)” might leave many real-estate agent somewhat overwhelmed.

I have met many real estate agents who know the answers to questions like that. And those who don’t tell me will find out for me.

Have you ever gone to the Apple Store or any tech store and asked about something the employees there didn’t have the answer to or gave you the wrong answer?

Have you ever experienced the same thing in a grocery store when you asked a simple question?

I’m sure we all have. The realization I came to is that many employees do not have the knowledge they are supposed to have. But also, even when they do, they don’t know everything, which is normal.

But in my view, it’s not acceptable to not know anything about your privacy practices when you work in healthcare or law.