A Day in the Life of a Stolen Healthcare Record | Hacker News Reader

A Day in the Life of a Stolen Healthcare Record

krebsonsecurity.com

46 pointsAlbuca6 comments

It really annoys me that in this day and age there is no system that exists that allows ME to be in control of MY medical data which I can give access to on a per-physician basis (think FB/Google permissions). Apple Health is a step in the right direction (though even as a fanboy I hate that it's Apple-only) and I love how I can share that data back out on a per-app basis.

I personally love the graphs/stats that I can pull from this data all being in one place and I'd love to have the same for ALL my medical records so that when I got to a new doctor I can easily give them all my records.

The problem with that is managing the granularity: you'd need to also grant access to the clinician's administrators, clinical coders, some administrative pipeline...

Won't someone please give me Secure, Private health care records controlled by Me and not the hospital, and retroactively apply this to all my records to date?

How do I even GET my healthcare record? I'd pay $500-1000 for this, easily. And I'm POOR.

There is literally no incentive in the system to help you, as a patient, keep your records.

Institutions, due to HIPAA and general conservatism, prefer that they have the one true copy of patient health data--this so much to the point of rerunning tests from other institutions (sometimes a good idea, sometimes not). They also know that you probably aren't going to go to a different hospital system--they're somewhat of a natural monopoly (if you ignore further regulatory shenanigans).

The doctors could care less--and as much as they gripe about EMRs, they'd gripe even more about having to deal with patients with incomplete records. The insurance company would prefer that they, if anyone, keep the records, again from an ease of maintenance standpoint.

This is the sort of thing for which we need meaningful legislation. Right now, for example, the digital requirement is basically just "lol scanned pdf". There is some improvement on this front, but it's a slow road.

Have you tried asking? There's often a fee schedule involved depending on who's asking and why - if the request comes from your attorney and it's for litigation, expect to pay a lot.

On the other hand, if you say you're moving out of state (or out of the country) and thus changing providers, it will probably be free. (This was my experience when I really did move out of the US and had to get hard copies of all my family's medical records.)

Your healthcare record does not exist as an entity anywhere; it is an amalgam of all the records different physicians and medical service providers have on you. It is not uncommon to need to gather all these records if, for example, you go to a research hospital for treatment.

The only practical method today is to keep your records yourself as they accumulate. When you see a doctor, ask for a copy of his consultation notes. If any tests are done, ask for copies of the full results. If you have imaging done, request a copy. Most medical imaging facilities can provide CD-ROMs with files in standard formats or that come packaged with viewing software.

Most importantly, make your own notes on what has transpired and what the doctor said.

If you ever do request all your records, you will discover that many physicians keep TERRIBLE notes. Sometimes the only record of a consultation is a hand-written form containing a few impressions and notes on vital signs. Thankfully, this is becoming less common, but even doctors that have implemented an electronic health record system that forces them to enter standard consultation records don't always put the full depth of the discussion you had in those records. It will also often be difficult to reconstruct start and stop dates for medications unless you keep track of that yourself.

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