this post was submitted on 21 Sep 2024
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TIL - HIPAA doesn't protect data from being shared between organizations without consent (www.youtube.com)
submitted 1 month ago* (last edited 1 month ago) by Scolding7300@lemmy.world to c/til@lemmy.world
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It obviously protects against sharing data with e.g. your employer, but if a health provider chooses to make your data shareable, there are 2.2M authorized entities that can potentially access the data (identifiable health data).

Excerpt of the video description: Most people think that HIPAA means that their medical records are kept private. But what if I told you that HIPAA doesn’t protect your privacy at all?

This is our first video in a series about medical privacy, specifically looking at legislation that stripped individuals of the right to consent to medical data sharing.

We focus on what HIPAA actually is, how it came to allow our data to be shared without us even knowing, how we’ve been tricked into thinking we have privacy, and steps we can take to reclaim control of our medical data.

00:00 The State of Medical Privacy is a Mess 02:29 What is HIPAA 07:39 How Your Data is Shared 12:10 The Illusion of Privacy 14:48 What Can We Do 22:16 We Deserve Medical Privacy

We deserve privacy in our medical system. Our health information is sensitive, and we should be allowed to protect it. Even while we fight for better medical privacy, please always prioritize your health.

Special Thanks to: Twila Brase, Rob Frommer, and Keith Smith for chatting to us!

List of doctors who have opted out of the surveillance system: https://jointhewedge.com/

Twila's website: https://www.cchfreedom.org/patient-toolbox/

Do you want to fight the system and lead a suit against medical data collection? Contact the Institute for Justice: https://ij.org/

Keith Smith's Surgery Center: https://surgerycenterok.com/

Brought to you by NBTV team members: Lee Rennie, Cube Boy, Sam Ettaro, Will Sandoval and Naomi Brockwell

Edit: changed the title to something that isn't misleading

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[–] Boozilla@lemmy.world 55 points 1 month ago* (last edited 1 month ago) (2 children)

Having permission to access to the HIPAA-protected dataset is only the first hurdle. You also need a medically valid or claim processing reason to look at individual patient records within that dataset. People have gotten into trouble by not respecting this. Doctors and other providers are not going to just poke around in the data for fun. Too little to gain for too much risk.

HIPAA is far from perfect, but it does do a decent job of protecting data at rest and in transit. If a bad actor like a hacker manages to get a copy of it, the sensitive stuff will be encrypted.

We handle HIPAA data at my job, and we all take it very seriously. There's annual training required, and a reporting process for violations. Nobody is looking at anything unless they really need to.

Large corporate health insurance providers are another problem. They of course do have access to it, and I am sure they abuse the privilege for data mining and scheming on claims denial strategies and so on. But that's a political and enforcement issue not an issue with HIPAA itself. They are violating HIPAA and getting away with it because they are a powerful lobby.

[–] bobs_monkey@lemm.ee 10 points 1 month ago (1 children)

If a bad actor like a hacker manages to get a copy of it, the sensitive stuff will be encrypted.

You know doctors offices are still one of the main users of facsimile transmission, right?

[–] Boozilla@lemmy.world 18 points 1 month ago (1 children)

Actually I do know that. Pharmacies, too. You do know they are not FAXing giant datasets with millions of patients in them, right?

[–] lemonmelon@lemmy.world 2 points 1 month ago (1 children)

I'm not disagreeing with you, but the fax loophole does need to be closed.

[–] Boozilla@lemmy.world 2 points 1 month ago (1 children)

You're right to point out the problem. Using a rhetorical tone was a bit sarcastic / condescending, so I mirrored it.

I think it's a question of perspective. Your doctor faxing something to a pharmacy or specialist is archaic at this point, and I agree it's not great. If they are using FOIP and not POTS, one would hope it's encrypted with TLS or something (if it's not, it's possibly a HIPAA violation if there's PHI in the FAX). But the blast radius is pretty small.

I suppose if a hacker compromised a hospital system's FOIP they could harvest a lot of medical records that way. But at that point, they are already in and they'd likely be more interested in fatter & juicier targets on the network. Bigger datasets with less effort (versus pulling from a trickle of FAXes going in and out).

Bottom line: yes, FAX is dumb, and it's a problem but it's very small compared to other things.

[–] lemonmelon@lemmy.world 2 points 1 month ago

Point of fact, I'm not bobs_monkey, the originator of the rhetorical tone. Fax in healthcare continues to survive well past its prime because there is an inherent loophole: analog data transfer is functionally unsuited to encryption. This allows fax to be operated at a "best effort" level of security. There are handling protocols that are meant to keep traditional fax transmissions as private as possible, but these are layer 8 processes with limited enforceability. Beyond that, traditional fax represents a pathway around requirements on encryption while still meeting HIPAA compliance standards.

FOIP is an improvement, but it still allows for interoperability with a traditional fax machine connected to a POTS line in some GP's office that they're unwilling to part with. That means the FOIP user can only be confident of the transmission being secure on their side. I can't speak to the overall adaptation of FOIP in hospital systems, but I do know that there are non-isolated instances of hospitals still relying on traditional fax as opposed to adopting a cloud-fax solution. Hell, there are still major hospitals using SL-100s as their primary phone switches.

I don't even want to get into codec mismatches, because that falls out of scope when it comes to a privacy discussion.

Long story short, achieving HIPAA compliance is a low bar with regards to fax, and if that were to change I believe we'd see fax disappear (finally!) shortly thereafter.

[–] Scolding7300@lemmy.world 2 points 1 month ago* (last edited 1 month ago) (1 children)

From what I understand from the video and the regulation definition under Health Care Operations there are many ways for the provider to share the data without consent (page 2: https://www.hhs.gov/sites/default/files/ocr/privacy/hipaa/understanding/coveredentities/sharingfortpo.pdf).

“Health care operations” are certain administrative, financial, legal, and quality improvement activities of a covered entity that are necessary to run its business and to support the core functions of treatment and payment. These activities, which are limited to the activities listed in the definition of “health care operations” at 45 CFR 164.501, include: < Conducting quality assessment and improvement activities, population- based activities relating to improving health or reducing health care costs, and case management and care coordination; < Reviewing the competence or qualifications of health care professionals, evaluating provider and health plan performance, training health care and non-health care professionals, accreditation, certification, licensing, or credentialing activities; < Underwriting and other activities relating to the creation, renewal, or replacement of a contract of health insurance or health benefits, and ceding, securing, or placing a contract for reinsurance of risk relating to health care claims; < Conducting or arranging for medical review, legal, and auditing services, including fraud and abuse detection and compliance programs; Business planning and development, such as conducting cost-management and planning analyses related to managing and operating the entity; and Business management and general administrative activities, including those related to implementing and complying with the Privacy Rule and other Administrative Simplification Rules, customer service, resolution of internal grievances, sale or transfer of assets, creating de-identified health information or a limited data set, and fundraising for the benefit of the covered entity.

Is that the first hurdle you were mentioning? I'm just trying to understand where is the restriction of the second hurdle if in 164.506 it says an entity can use the data:

"Use or disclose protected health information for its own treatment, payment, and health care operations activities"

Trying to understand the distinction add have another TIL moment, not aeguing against the comment

[–] Carighan@lemmy.world 2 points 1 month ago (1 children)

I mean to a degree this makes sense. It might very much be medically required to share such data.

How to, for example, prosecute a doctor for quackery if you cannot get access to the cases they worked on? So for oversight, someone overseeing it needs to be able to know drtaiks about the cases, too.

[–] Scolding7300@lemmy.world 1 points 1 month ago* (last edited 1 month ago) (1 children)

Hypothetically, they can ask for consent from patients, with some form that allows investigative agencies to access contact information of patients for such cases. I think there are other options other than sending it without consent and even the knowledge of the patients.

[–] Carighan@lemmy.world 2 points 1 month ago

I guess personally I'd even be fine with not being asked, though now that you mention it, I'd like to at least know.

But then again, to some extend that's how it works here. My insurance knows about everything, but I need to allow doctors to access or modify my file, and then only portions of it. Like my general doctor can do a lot of stuff, but obviously my dentist can only do dental and radiology stuff.

[–] scytale@lemm.ee 35 points 1 month ago (1 children)

I’ve always taken HIPAA as a compliance standard to protect health data from fraud, theft, etc., and not as a privacy standard. So its focus is more on security than privacy.

[–] Scolding7300@lemmy.world 2 points 1 month ago

I guess there's some deminishing returns if the data gets distributed to too many entities

[–] southsamurai@sh.itjust.works 8 points 1 month ago (1 children)

I'm not watching the whole video series because I'm no longer paid to sit through "continuing education" lol.

But, while the title of the post is misleading, hipaa was never meant to improve privacy, and when it was originally passed, anyone paying attention to the news knew that. The idea that it's a law intended to do something about privacy as a primary goal came later.

And, in day to day levels, it was actually an improvement over the lack of privacy that existed before it. Where it fails is in privacy protections from the government itself, and from insurance corporations. But it wasn't really designed for that, despite people somehow coming to believe it did.

But for the average person? It made it much harder for you or me to access someone else's records, and slightly reduced exposure of records overall.

Now, again, this isn't based on the videos, only the title of the post. The title is inaccurate and misleading, though I hope that people do look into what hipaa does and doesn't do for them because of the title.

[–] Scolding7300@lemmy.world 5 points 1 month ago (1 children)

Changed the title, not sure how to balance "meant to make it easier to share between organizations (gov included)" and the misconception thay it is a privacy oriented regulation

[–] southsamurai@sh.itjust.works 3 points 1 month ago (1 children)

much better title! Imo, it communicates the premise perfectly.

[–] Scolding7300@lemmy.world 2 points 1 month ago* (last edited 1 month ago)

Awesome, thank you for pointIng out the issue with the previous one!