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

mnalis:

I would be surprised if receptionist knew any better. International law degree with emphasis on privacy in combination with setting up IT infrastructure is usually not a requirement for receptionist job title (nor for MD).

I don’t expect people who work in admin to have advanced IT knowledge. But I do expect them to be able to know the basics of their organization’s privacy practices and to be able to explain it in plain terms. Especially if they work in healthcare or law, where confidentiality is vital.

I once had a receptionist at a doctor’s office ask me what my medical issues were in front of all the other patients who were in the waiting room. You don’t need fancy degrees to know that that is inappropriate and violates privacy.

mnalis:

You mention GDPR; if you’re in EU, your doctor’s office should have a designated DPO (Data Protection Officer), and its contact is mandated to be listed. That is the person you should be contacting with your privacy concerns;

This is good news if true.

mnalis:

not the receptionist or the medical doctor themselves (who [hopefully] have a different field of expertise).

I disagree on this part. The information I am inquiring about is IMHO, not complicated. It’s precisely why Carissa Véliz invites all of us to ask all the people and organizations who handle our data what their privacy practices are.

Most doctors have privacy policies in their medical forms. In fact, I do believe it’s a must, which is why I was surprised my doctor didn’t have any in hers. If I am about to sign a lease agreement with a landlord, I expect them to be able to answer any questions I have about the terms that they want me to agree to.

Similarly, if a doctor presents me with a form with a privacy policy, they should be able to answer any questions I have about the document they want me to sign. It shouldn’t be complicated. If they can’t, that is a huge red flag.

One doctor I saw had a privacy policy that said that they may share some information about you for medical research. If I want to ask about that, about who these third parties are, how my info is shared, and used, I expect you to have the answers. Otherwise, you are expecting me to sign a document that neither of us understands, which is INSANE. It’s the blind leading the blind.