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HIPPA rules are easily circumvented unless you as a patient are paying attention: I can't tell you how many forms I've opted out of that wanted to explicitly export my data to third parties and partners that are not HIPPA compliant. And at least for my healthcare providers that use MyCharts, they like to make it part of the echeckin workflow, with no option to refuse. So you're forced to go up to the desk to check in and explicitly reject it each and every time. It's a healthcare dark pattern.

And then there are online providers like better health that don't have the option to opt out at all. So you just have to avoid them entirely.

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Wait—this doesn't make any sense. I'm a physician and have a lot of experience dealing with protected health information. Third parties are required to sign a HIPAA BAA and obligated to uphold privacy/security standards equal to that of your physician and hospital. Can you provide some specific examples of the third parties you're talking about?

MyChart itself is a component of Epic (the EMR) and is absolutely HIPAA compliant. Every healthcare institution I've worked with has taken HIPAA and privacy/security regarding patient data extremely seriously. Non-HIPAA compliant vendors are an immediate non-starter and don't even enter discussions when looking at new products.

Sure, next time I find one of the forms I'll snag it for you. It was rather eye catching because it explicitly stated "You're allowing us to share data with third parties and service providers that are not HIPPA compliant." How do I get it to you?

I wasn't claiming that MyCharts isn't HIPPA compliant: I was complaining as part of a MyCharts workflow I was presented with a form that wanted me to grant someone the right to send my data to non-compliant organizations, and as I said above explicitly stated so.

My email is in my profile page. And if you have truly found that the institution is sharing protected health information (e.g., even just names and date of birth) with third parties who have not signed BAAs, that is a lawsuit worth tens of millions plus government fines of $50,000 per piece of compromised data per patient. I highly suspect that there's some misunderstanding or miscommunication here.

The annual HIPAA training I was subjected to for nearly a decade on the EMR provider side of things never brought up these scenarios, but the Privacy Rule does have carve-outs that allow PHI to be transmitted to entities that would not be considered Business Associates, if the patient consents.

I'm a retired software developer that's worked in just about every healthcare-adjacent industry segment you can imagine with HIPAA compliance being an evergreen issue. I know how this sausage gets made on the back end and let me tell you regardless of what impression has been made to you about compliance and safeguards the reality behind the scenes is always messy. Hundreds of gigs of unanonymized user data lying around on developer machines, getting tossed out accidentally during equipment rollouts, leaky API implementations, half-assed compliance testing, lack of meaningful continuous oversight, vendor services with varying levels of compliance hot-glued together on the back end, outright theft of data, this list is incomplete. I'd recommend a weapons-grade dose of skepticism over any claims of meaningful data privacy as the last 30 years have consistently and comprehensively shown that anything that gets digitized eventually gets outed if there's a financial motivation to do so.

Yes, I do believe what you're telling me—the state of healthcare tech is definitely leagues behind general consumer tech. However, I do think this is a meaningfully different class of issue when it comes to patients' perceptions and actual harms. Patients are afraid of having their health data used against them. For example, revealing medical conditions to potential employers, revealing health information to friends/family, etc. There's a growing mistrust of healthcare institutions in recent years, and there are unfounded accusations of healthcare institutions selling data for financial gain like social media companies and even the DMV (https://www.caranddriver.com/features/a32035408/dmv-selling-...). This class of nefarious patient data privacy/security negligence effectively doesn't happen. I've treated patients who are illegal US immigrants, I see patients who use and possess illegal drugs while in the hospital, but they're not reported to anyone. They're simply treated and discharged. Unfortunately, a growing number of patients don't believe this is the case, and we see substantial disparities in levels of care provided to these patients who fear healthcare.

I'm not at all dismissing how terrible it is that healthcare tech companies can be lax with patient data. This absolutely needs to be better! But at the same time, this sounds more like incompetence than active malice. Practically speaking, a patient is extremely unlikely to experience actual harm because a developer accidentally took patient data home on a personal laptop. Although, I would love to hear more about what kinds of violations you've seen in your time in health tech? I work with third party vendors from a healthcare institution, and I absolutely want to figure out how to fix this.

With stuff like illegal drugs, so long as records are retained by the hospital, what prevents the feds from coming in later with a warrant to go through them?

In the US a mere warrant is not enough to pierce doctor patient privilege, afaik. At least i would hope it would take a subpoena or a court order or something of the ilk.

Now, though, if a third party accidentally leaks your patient info, or lead pipes are involved

HIPAA trumps the warrant. HIPAA is serious when it says patient data can only be shared for treatment, payment, and hospital operations purposes. Law enforcement is not an allowable reason to disclose patient information without their permission.

I don’t usually comment on these posts, but as a HIPAA compliance practitioner working with covered entities (also business associates) I have to take a contrarian view of HIPAA compliance efforts by providers. HIPAA is mostly a “check the box” type of compliance effort, as opposed to building a “culture of compliance.” Most compliance efforts stop at the technology barrier. For business associates, the compliance dynamic is even worse. While the larger BA’s do generally comply, because their focus is generally on the technology, for midsized and smaller BA’s , in most cases know the CE will take at face value that the BA is compliance. But there is a reason about 30% (by number) of all breached are caused by BA’s

100% this. I just visited an urgent care center yesterday for some strep tests. I was given an electronic signature pad and told to sign for "consent to care". No documentation was given to me on what I was signing - just that I needed to sign.

I had to ask for a paper copy of the form I was signing, which was handed to me. That document said that "I acknowledge receiving the privacy notice ..." Was that given to me? Of course not. Asking for that - well let's just say I think I was the first person to ever ask for any of this documentation. I'm sure my information has been shared with 30 other entities - for a strep test. It's insane and unenforceable as a patient who just wants to get shit done.

The fact that it is even legal to ask patients to sign away their right to privacy boggles the mind.

There are already too many restrictive law and rules in the US around healthcare, and here you want to add another restriction.

Ok, I’ll bite. List some concrete examples. Otherwise, I have to land on the default that regulation is good and works better than a free-for-all.

>Ok, I’ll bite. List some concrete examples.

How generous of you

Hitchen's Razor: what can be asserted without evidence can also be dismissed without evidence.

In the US, adults are generally considered competent to make their own decisions.

It's mind boggling because I highly doubt it's actually true. I'm not sure where the OP is getting that info. Patients can't waive away HIPAA privacy/security rights.

I think the OP is assuming that when healthcare institutions partner with third parties, those third parties are not required to uphold HIPAA. If that's his/her belief, it's 100% false. Third parties associating with healthcare institutions have to sign business associate agreements (BAAs) that require them to uphold the same standard of privacy/security regarding patient data as the first party healthcare institution. There are severe financial penalties for violating HIPAA, and every healthcare institution I've been a part of takes this extremely seriously.

Before I start, I'm not singling you out- I am happy that you're participating in this discussion and sharing your first hand knowledge.

The thing for me is that if HIPAA truly does provide me privacy of my personal information and health care information, why are all of these privacy and consent forms required?

Whenever I am handed a form that says "privacy policy" my sense is immediately raised - what is it that they're trying to hide from me through mountains of legalese? When I don't receive one (as was the case in my doctors visit) then I am REALLY on edge.

For example, with my health care visit, this thread prompted me to call the listed numbers on the website for the health care provider to discuss their privacy policy. The provider's number dumps you into an IVR that has zero way to reach a human - you must dial an extension, and there is no option for an operator. I ended up calling their headquarters to get a callback from a human.

If there are standard mechanisms and policies in place, then we should be able to understand the rules once and never have to sign another form again, because the rules would be clear, unambiguous, and applicable to every health care interaction. If the rules are clear about not waiving HIPAA privacy/security rights, then why have a privacy policy that's three pages of inscrutable legalese that gives a bunch of weasel room for them to "share" information?

No problem—glad to participate! There's a lot of cynicism that leads to misinformation about how healthcare works, so I'd like to clean that up. Let's attack and fix the broken parts of the system, but we should praise the working parts. I think patient privacy/security is one of the few things the US gets mostly right about healthcare.

Regarding the privacy policies: these are created by the legal department and physicians in the department are told to distribute them and get signatures when necessary in order to do things by the book. However, your rights are inalienable and protected regardless of whether you actually receive the policy and sign the appropriate box. If you don't receive the policy, the healthcare institution is on the hook and could face a fine if reported to the DHHS. Things could absolutely be done more efficiently and clearer for patients, but there's a fear in changing things ("if it ain't (horribly) broke, don't fix it"). Trying to improve how privacy policies are disseminated and patients informed could result in an inadvertent violation of HIPAA that results in large fines. So healthcare institutions are disincentivized from trying to improve things here.

I reviewed the patient privacy policy for a few large institutions in the US, and it all seems to support what I'm saying. For example, here's NYU's policy on business associates: https://nyulangone.org/files/business-associates.pdf

NYU has additional policies here: https://nyulangone.org/policies-disclaimers/hipaa-patient-pr.... UCLA Health has similar policies here: https://www.uclahealth.org/privacy-practices. Every institution has essentially the same policies as they're all just a reflection of HIPAA.

The only ways in which patient data can be shared with others are if (1) they're involved in your treatment (e.g., your doctor at another hospital), (2) payment purposes (e.g., insurance), (3) health care operations (e.g., third party vendor software like EMRs, PACS, etc.) All are required to be HIPAA compliant if they're covered entities (i.e., healthcare institutions) or sign a BAA with a covered entity that essentially puts the same HIPAA requirements on them. A violation again results in massive fines, C-suite level firings, and expensive legal fallout.

I spoke with the compliance manager at the urgent care this afternoon and had a pleasant conversation. I shared my concerns that I was never provided a copy of the paperwork I was expected to sign - and they took that feedback to hopefully improve in the future.

I had one question in case you’re still monitoring this thread. The compliance manager mentioned a “health information exchange” which I opted out of (since it was something I can control). Do you have experience with these? It seems benign from the searches I’ve done since the conversation but I would be curious if you had any insight as a medical professional

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