• The Baldness@beehaw.org
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    1 year ago

    We need a government-run medical records system, so there is one source of truth, which would be illegal to sell or share with anyone other than a patient’s doctors. My hospital has changed records systems twice now and my own doctor didn’t have access to key information from ten years ago that I remembered but he didn’t. It’s 2023, for fuck sake.

    • Aesculapius@kbin.social
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      1 year ago

      Right now US privacy laws aren’t compatible with one overarching centralized healthcare record.

      Short of that, however, would be an interoperable system. Epic, which is the largest US medical record system, allows for different facilities on the same platform to share information. It is up to the specific facility if a records release is required. Most systems in a given region will have that worked out ahead of time and build it into their general consent for treatment (a form everyone signs). It works quite well. Where I practice, I am able to get all the information I need from across the country, assuming they are on the same platform at the time I am seeing the patient.

      For other platforms, it’s more mixed. Federal law requires certain interoperability, but it is fairly limited and not real time. Generally it involves a flash drive with the info on it.

      As for the comment about changing platforms in a similar system, that is a struggle. Hospitals are required to keep patient information forever. When they first started going up on electronic systems, they only went back so many years as the scanning costs were huge. As time has moved forward, many systems are bringing all the information over to the new system so they don’t have to maintain more than one electronic system for archive purposes.

      Source: I am a physician and chief medical officer.

    • GhostMatter@lemmy.ca
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      1 year ago

      That’s the case in many places around the world. From your “We need”, I’m assuming you’re in the USA?

    • Gaywallet (they/it)@beehaw.org
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      1 year ago

      which would be illegal to sell or share with anyone other than a patient’s doctors

      Assuming you are in the US, this is already the case. HIPAA is incredibly strict.

      • The Baldness@beehaw.org
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        1 year ago

        There are clearly ways around HIPAA. I’ve had advertising displayed to me that clearly showed they knew that not only had I been to a doctor, but they knew the results of a specific blood test I’d just taken. It’s the fucking patient portals. They’re clearly harvesting data.

        • Gaywallet (they/it)@beehaw.org
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          1 year ago

          If you ever experience this I highly encourage you to file a HIPAA complaint. They take this very seriously and minimum violations are steep. If you have the time and energy, please bring this to the attention of the clinic or facility you visited - I guarantee you there are staff who are in complete agreement with you and would be furious if this were true.

        • upstream@beehaw.org
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          1 year ago

          Some of this could be learned or guessed from your behavior too. Google or FB tracking your location. Combined with other factors they might just even guess the right condition, or you googled something and they combine this data to profile you.

          Obviously fully possible that you are right too, but that would be a huuuuge violation for a quick buck.

    • HubertManne@kbin.social
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      1 year ago

      agreed. as patients we should be able to login and then select hospitals, practices, doctors, etc to allow access.

      • liv@beehaw.org
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        1 year ago

        We kind of have this where I am, insofar as we sign a consent for one doctor to take charge of it (it’s ours and we can have copies) and then we can sign in online to see notes and test results, etc. But when I see someone else I have to get copies of their notes sent to my doctor’s surgery for them to link to my file. I can’t add to it myself, only make requests.

        • HubertManne@kbin.social
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          1 year ago

          Yeah but you say where you are. Can you use it anywhere in the country with that effect? Maybe if you are not the US but here we don’t have a centralized system.

          • liv@beehaw.org
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            1 year ago

            Oh, sorry, yes I meant anywhere in the whole country but I don’t live in the US. I live in Aotearoa (a.k.a New Zealand).

            I just mentioned it as it seemed close to what you are suggesting.