You Have No Medical Privacy
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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...

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

  • Boozilla@lemmy.worldEnglish
    37·
    2 months ago

    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.

    • Scolding7300@lemmy.worldOPEnglish
      21·
      2 months ago

      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 Maconar@lemmy.worldEnglish
        1·
        2 months ago

        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.worldOPEnglish
          1·
          2 months ago

          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 Maconar@lemmy.worldEnglish
            2·
            2 months 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.