She Said "Don’t Write That Down." The Doctor Did Anyway.

00:07:44
https://www.youtube.com/watch?v=1PeAfNBNARI

Résumé

TLDRThe video discusses a troubling anecdote about a patient who felt her privacy was violated during a doctor's visit due to the extensive collection of personal information for electronic health records (EHRs). It highlights how EHRs, mandated by the US government, require providers to collect data to prove 'meaningful use' for financial incentives. The patient expressed concern about sensitive information being recorded, but the doctor insisted on documenting it, illustrating a lack of control over personal data. The video emphasizes the risks of data breaches in healthcare and the need for patients to have agency over their information. It calls for a cultural shift towards prioritizing patient privacy and informed consent in healthcare settings.

A retenir

  • 🩺 Patients often have little control over their personal information in healthcare.
  • 📊 EHRs are mandated by the US government, leading to extensive data collection.
  • 💰 Providers collect data to prove 'meaningful use' for financial incentives.
  • 🔒 Once data is recorded, patients cannot delete or restrict access to it.
  • ⚠️ Healthcare systems are prime targets for data breaches and ransomware attacks.
  • 🤝 Trust between patients and doctors is compromised when privacy is violated.
  • 📜 HIPAA allows sharing of data without patient consent with many entities.
  • 🗣️ Patients should advocate for their privacy and question data collection practices.
  • 🏥 The exam room should feel safe for patients to share information.
  • 🌐 The Ludlow Institute focuses on privacy and digital autonomy education.

Chronologie

  • 00:00:00 - 00:07:44

    The video discusses a powerful anecdote shared by a member of the NBTV community about her unsettling experience at a doctor's appointment. She felt a loss of control over her personal information due to the extensive data collection practices mandated by the US government for electronic health records (EHRs). These records require medical providers to collect a wide range of personal data, not directly related to patient care, to prove 'meaningful use' for financial incentives. This leads to sensitive information being recorded against patients' wishes, raising concerns about privacy and data sharing without consent. The video highlights the risks of data breaches in healthcare, where valuable personal information is often targeted, leading to potential exposure on the dark web. It emphasizes the importance of patient trust and the need for a healthcare system that prioritizes privacy and informed consent over compliance and data collection. The video calls for a change in how patient data is handled, advocating for systems that respect patient agency and ensure a safe environment in medical settings.

Carte mentale

Vidéo Q&R

  • What are electronic health records (EHRs)?

    EHRs are digital versions of patients' paper charts, mandated by the US government for clinics and hospitals.

  • Why do medical providers collect so much information?

    Providers collect extensive data to prove 'meaningful use' of EHR systems, which is necessary for receiving Medicare and Medicaid rebates.

  • Can patients control who sees their medical data?

    No, once data is in the system, patients cannot delete it or restrict access to it.

  • What are the risks associated with healthcare data?

    Healthcare systems are prime targets for ransomware attacks, leading to potential data breaches.

  • What should patients do if they feel their privacy is violated?

    Patients should prioritize their health but can advocate for better privacy practices when not in urgent care.

  • What is the role of HIPAA in data sharing?

    HIPAA allows sharing of personal data with numerous entities without patient consent.

  • How can patients ensure their privacy in healthcare?

    Patients can question the necessity of data collection and advocate for informed consent policies.

  • What is the Ludlow Institute?

    The Ludlow Institute is a nonprofit focused on privacy, digital autonomy, and educating people about surveillance.

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Sous-titres
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Défilement automatique:
  • 00:00:00
    So I wanted to post this short video because it was such a powerful
  • 00:00:03
    anecdote that I thought it needed to be shared.
  • 00:00:06
    So someone in our NBTV members chat reached out to me recently.
  • 00:00:10
    She just got back from a doctor's appointment and she felt really shaken up.
  • 00:00:14
    Not because of a diagnosis, but because she realized
  • 00:00:17
    just how little control she had over her personal information.
  • 00:00:21
    It started right at check in.
  • 00:00:23
    The medical assistant was asking for everything, not just medical history,
  • 00:00:27
    but job info, demographic details, lifestyle questions.
  • 00:00:32
    None of that had anything to do with the reason that she was there
  • 00:00:35
    that day, and all of it was feeding into a giant electronic health record.
  • 00:00:40
    What most people don't realize is that in the USA,
  • 00:00:43
    these electronic health records, EHRs, aren't just a convenience.
  • 00:00:48
    They were mandated by the US government.
  • 00:00:51
    Through legislation and funding programs run by HHS,
  • 00:00:54
    clinics and hospitals were required to digitize patient data.
  • 00:00:59
    And now a lot of that data doesn't stay in the clinic.
  • 00:01:02
    It gets passed upstream.
  • 00:01:04
    There are 2.2 million entities that your personally identifiable data
  • 00:01:09
    is allowed to be shared with under HIPAA without anyone needing
  • 00:01:13
    to get your permission.
  • 00:01:14
    So why do you always get asked for your weight, blood pressure, smoking
  • 00:01:18
    history, and all kinds of other stats
  • 00:01:20
    that probably don't have anything to do with your care that day?
  • 00:01:23
    Because medical providers are required to prove what's called
  • 00:01:27
    “meaningful use” of these EHR systems.
  • 00:01:30
    Unless they can prove “meaningful use”,
  • 00:01:33
    the medical provider won't get their Medicare and Medicaid rebates.
  • 00:01:37
    So there's a financial incentive to collect your data.
  • 00:01:41
    There are built in reasons for providers to ask you for as much information as possible,
  • 00:01:47
    even if it's not directly related to your care.
  • 00:01:49
    That alone is frustrating.
  • 00:01:52
    But here's what really upset her. During the appointment,
  • 00:01:55
    when she was finally in front of the doctor
  • 00:01:58
    instead of the medical assistant who was taking down all her data,
  • 00:02:01
    she confided in the doctor something personal, something
  • 00:02:05
    she thought the doctor should know, but that she didn't want recorded.
  • 00:02:09
    So she asked, “Please don't put that in my file.”
  • 00:02:12
    And the doctor said, “Well, I need to know about it.”
  • 00:02:16
    And she replied, “Yes, that's why I told you, but I don't want it
  • 00:02:20
    written in the file because that file will get shared all over the place.”
  • 00:02:25
    And the doctor paused and then said, “Well, I'm going to write it in anyway.”
  • 00:02:29
    Just like that, her sensitive information, something she specifically asked
  • 00:02:34
    to keep off the record, is now part of a permanent digital file.
  • 00:02:38
    And once that data is in there, it's out of your hands.
  • 00:02:41
    You can't delete it.
  • 00:02:42
    You can't restrict who sees it.
  • 00:02:45
    And under current regulations, that data could be shared for a wide
  • 00:02:49
    range of health care operations. Purposes without your knowledge or consent.
  • 00:02:54
    That includes hospitals, insurance companies, pharmacy systems, billing
  • 00:02:58
    contractors, analytics firms and all kinds of third party vendors.
  • 00:03:02
    The definition of health care operations for which your data can be
  • 00:03:06
    shared, is almost 400 words long.
  • 00:03:10
    It’s essentially a list of about 65
  • 00:03:13
    non-clinical business activities.
  • 00:03:16
    So nothing having to do with your medical treatment whatsoever.
  • 00:03:20
    These entities don't need to notify you when your data is shared
  • 00:03:24
    and you're not allowed to opt out.
  • 00:03:26
    You can't even get a list of everyone it's been shared with.
  • 00:03:29
    It's just out there.
  • 00:03:31
    We have an entire video diving into the details if you're interested.
  • 00:03:35
    Now, legal sharing isn't the only risk of this accumulated data.
  • 00:03:39
    What about data breaches?
  • 00:03:41
    Well, this part is almost worse.
  • 00:03:44
    Health care systems are one of the top targets for ransomware attacks.
  • 00:03:48
    That's because the data they hold is extremely valuable.
  • 00:03:52
    Full names, birthdates, Social Security numbers,
  • 00:03:55
    medical histories, and billing information all in one place.
  • 00:03:59
    It's hard to find a major health system that hasn't been breached.
  • 00:04:03
    In fact, a 2023 report found that over 90% of healthcare
  • 00:04:07
    organizations surveyed had experienced a data breach in the past three years.
  • 00:04:12
    That means that if you've been to the doctor in the last few years,
  • 00:04:15
    there's a very real chance that some part of your medical file
  • 00:04:19
    is already floating around with on the dark web in a leaked
  • 00:04:23
    ransom wire dump, or being quietly sold by data brokers.
  • 00:04:26
    A recent episode of Document Diaries just explored an incredibly chilling
  • 00:04:30
    example of such a healthcare breach,
  • 00:04:32
    where there were people who chose to end their own lives
  • 00:04:35
    as a result of their personal information getting out there.
  • 00:04:38
    So when your doctor says, I'm just putting this in your chart,
  • 00:04:42
    you're not just trusting them,you're trusting a system of millions of entities
  • 00:04:47
    and a digital infrastructure
  • 00:04:49
    that has a proven track record of failing to protect you.
  • 00:04:53
    Once you start becoming aware of how your data is collected and shared,
  • 00:04:58
    you see it everywhere.
  • 00:04:59
    And in high stakes moments like a medical visit,
  • 00:05:03
    pushing back is hard.
  • 00:05:04
    You're at your most vulnerable.
  • 00:05:06
    And the power imbalance becomes really obvious.
  • 00:05:09
    So what do patients do when they feel they trust is being violated?
  • 00:05:13
    They start holding back. They say less.
  • 00:05:16
    They censor themselves.
  • 00:05:17
    This is exactly the opposite of what should happen in a healthcare setting.
  • 00:05:22
    Your relationship with your doctor is supposed to be built on trust.
  • 00:05:27
    But when you tell your doctor something in confidence
  • 00:05:29
    and they say, “Oh, I'm going to log it anyway.”
  • 00:05:33
    That trust is gone.
  • 00:05:34
    The problem here isn't just one doctor. From their perspective,
  • 00:05:38
    they're doing what's expected of them.
  • 00:05:40
    The entire system is designed to prioritize
  • 00:05:43
    documentation and compliance over patient privacy.
  • 00:05:47
    But privacy matters.
  • 00:05:49
    And not because you have something to hide.
  • 00:05:51
    You might want your doctor to have full access to everything.
  • 00:05:54
    That's fine.
  • 00:05:56
    But the point is, you should be the one deciding that.
  • 00:05:58
    Privacy means that you have control.
  • 00:06:01
    It means that you get to choose what's shared and with whom.
  • 00:06:05
    Right now, that choice is being stripped away
  • 00:06:08
    because of all of these systematized compliance mechanisms
  • 00:06:11
    and a culture that says that your data isn't important.
  • 00:06:15
    And so it's fine for a doctor to disregard your wishes
  • 00:06:19
    about how that data is handled.
  • 00:06:21
    So what can we do?
  • 00:06:23
    Well, first of all, if you're at the doctor,
  • 00:06:25
    you should prioritize
  • 00:06:26
    getting the care that you need, especially if you're in a high stakes situation.
  • 00:06:30
    You need to focus on getting healthy again.
  • 00:06:33
    But all the rest of us can help when we're not in the need of urgent care.
  • 00:06:37
    By questioning this normalization of mass data collection and health care.
  • 00:06:41
    We can start asking what information is really necessary.
  • 00:06:45
    We can push for systems that respect patient agency,
  • 00:06:49
    and we can support policies that prioritize informed consent.
  • 00:06:52
    over blanket data grabs.
  • 00:06:54
    You should be able to go to the doctor
  • 00:06:57
    and share what's relevant
  • 00:06:58
    without wondering who's going to have access to that information later.
  • 00:07:03
    The exam room should feel safe.
  • 00:07:06
    Right now it doesn't and that needs to change.
  • 00:07:09
    If you want some actionable steps that can help change this situation
  • 00:07:12
    and see our HIPAA video linked in the video description.
  • 00:07:15
    Health care is in major need of a privacy overhaul.
  • 00:07:20
    NBTV is a project of the Ludlow Institute,
  • 00:07:22
    a nonprofit focused on advancing freedom through technology.
  • 00:07:25
    We focus on privacy and digital autonomy, and teaching people
  • 00:07:29
    about how surveillance is embedded in every part of our lives.
  • 00:07:32
    If you want to support our educational efforts,
  • 00:07:34
    head to Ludlow institute.org/donate.
  • 00:07:38
    We also have a shop where you can purchase all kinds of cool swag that also help
  • 00:07:42
    support our mission.
Tags
  • Patient Privacy
  • Electronic Health Records
  • Data Collection
  • HIPAA
  • Healthcare System
  • Data Breaches
  • Informed Consent
  • Medical Data
  • Trust in Healthcare
  • Ludlow Institute