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

FranklyFlawless:

Almost there, the only way people are going to learn that this is an important issue is if it affects them. This logic applies to you, me, and everyone else. The only difference is what each of us does, I chose to boycott/exit because I do not need to ask anyone for permission to leave.

That’s fair, but as I said, not everyone has the same options. That being in said, I intend to raise the issue with my local data protection agency. I’m not going to report my doctor, at least for now, but I will inquire about them about the use of Gmail and WhatsApp in healthcare, but also other businesses that handle customer data.

WhinyHamletPayer:

It is simply too complicated for a doctor’s office to manage and would come off as peculiar for making such a request.

I don’t believe that to be the case. I don’t think I am asking for too much.

But even if I were to agree with you that it’s too complicated, does it matter if what they are currently doing is in violation of the law and their own stated medical standards?

randomperson:

I had limited success supporting a psychotherapist to choose privacy fist solutions, but only as long as it was a convenient (and ideally cheaper) option.

By “supporting them”, do you mean that you are helping them set better practices as a privacy expert?

Or were you a client of this psychotherapist who has certain privacy requests, and they were willing to meet you for some of them?

randomperson:

People in the healthcare system will not care as long as they don’t actually feel any strong negative consequences.

People are willing to choose convenience even if it’s a violation of law, and in the context of healthcare, that is a big problem.

randomperson:

And you can’t make them care.

There is some truth to this, but it’s not true in the absolute. We can convert some people. Some healthcare workers have better privacy practices than others.

randomperson:

You could be contrary and leave your doctor for another one.

As I explained multiple times, not everyone has that option. Especially when most doctors have bad privacy practices. If someone has to choose between the very best specialist doctor who has poor privacy practices and a pretty good specialist who has excellent privacy practices, I would not blame them for choosing the latter, even if it’s an unfortunate compromise.

Even if we fail, we should be able to respectfully express our pushback and not get flack for it. A previous doctor refused to see me because I expressed reservations about their poor privacy practices. No one should be denied care for asking questions, demanding comprehensible answers, and expressing doubt.

randomperson:

• Then you can give them negative ratings referring to bad privacy practices on doctor rating sites.

I am open to doing that. However, although it’s very possible and even likely that you could get pushback from other patients online because they have little awareness about privacy and are drunk on the surveillance Kool-Aid.

I have been on local online forums from my location, where I have raised issues about privacy, and I get a lot of harsh pushback from people who think it’s normal to have to share your location to make a bank transaction from your banking app. People are quick to reply with insults instead of making their case for why I’m wrong and why they’re right.

randomperson:

• You could also dig into the details, if they are actually acting according to law […]

As I said earlier, I plan to contact my local data protection agency and inquire about it. I have found quite a few articles about the common use of WhatsApp and Gmail in healthcare and how, although it’s very convenient, it is not compliant with doctor-patient confidentiality laws.

mondaq.com

OCP Warns About Patient Privacy In Electronic Messaging

In May 2023, the Ontario College of Pharmacists ("OCP") noted that it has been seeing an increase in the use of unsecured electronic methods by pharmacy professionals.

bbc.com

Health board staff shared patient data on WhatsApp

Staff at NHS Lanarkshire used an unauthorised chat group to share names, phone numbers and addresses.

linkedin.com

WhatsApp and Patient Care: A Legal Time Bomb for Healthcare

Convenience Today, Catastrophe Tomorrow WhatsApp is everywhere in healthcare. Doctors forward X rays, nurses share wound photos, labs push reports, call centres confirm appointments and families receive discharge notes by message.

Reading time: 8 min read

randomperson:

[…] and sue them if you find a violation.

I can’t afford to sue, so that is never going to happen. But if my data protection agency is willing to reprimand and hopefully launch systemic change after I make a complaint, that would be wonderful.

randomperson:

But I don’t believe that would change much.

That may be true, but it’s still worth trying. Look at Louis Rossmann. He’s a consumer rights activist, and by extension, a privacy rights activist. Although he is very harsh on himself and doesn’t think he was able to accomplish much legislative change, he has arguably inspired millions of people. He has made a small, significant difference and is inspiring people to do the same. I believe PG and TechLore are on that very same path. The work is not done, but we are making small progress.

randomperson:

People who care about privacy or have the capacity to understand vast abstract social systems are to much of a minority.

I don’t consider myself an expert. I don’t know if I have a strong grasp on vast abstract social systems, if I have any, but I understand some basic things about privacy. And I believe millions of regular people can do the same.

The role of PG, TechLore, and other prominent privacy voices like Carissa Véliz and Naomi Brockwell, and even journalists, is to help regular people understand these issues and make better decisions about their lives and our collective future as a society.