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On your health records:
Whenever you ask for your records, ask for ALL records and indicate 2 extra things - a copy of everything in the "media tab" and an "accounting of disclosures" otherwise, you won't get everything.
Whenever you ask for your records, ask for ALL records and indicate 2 extra things - a copy of everything in the "media tab" and an "accounting of disclosures" otherwise, you won't get everything.
The "media tab" is specific to Epic electronic health records (EHRs). Most people don't know what EHR their doctor/hospital uses, so ask for it anyway. If they have something similar, they should disclose that information.
What is the "media tab"? It's a part of your EHR that's only available to clinicians - you can't see it in your portal. There they store all sorts of things, like readouts from ECGs or EMGs, scanned in documents, pictures, notes, and more. Hundreds of pages they can search on you
Ex: when I asked for records from one neurologist, I got a report about an EMG. When I asked for the info in the "media tab," I got the actual readout. Why is this important? Because any future neurologist doesn't want a report, they want to interpret the original readout.
Most drs don't know this information isn't disclosed to you automatically. Some institutions purposefully keep this from you (esp notes they don't want you to see). Others outsource their med record requests to 3rd parties that don't have access to the "media tab."
You have to ask for it specifically & follow up. Medical records requests are not often carried out in full & a lot of info may be left out. It's up to you to be diligent so you have the information you need for future care. Interoperbility (EHRs connecting) won't save you.
As for an "accounting of disclosures," this is a list of where they've sent your information to. It doesn't have to include instances where they sent your info to other doctors/hospitals but sometimes it does. Know who has your info and what they have.
Accountings of disclosures are not something a health care provider will give you without you specifically asking for it but it can help you know who has what and when. You may not think it's important, but I assure you, it's worth keeping track of.
You don't have to believe me on any of this except for the single fact that I've fought hard with the OCR against some of the biggest institutions to get access to my information. I've tracked down who has what and how it's been used against me. You want this information.
I didn't fight only for myself. I fought for you too. I fought so you could have complete access to your own records, so you could know where they are and how to get a hold of them. This fight was for you because you deserve better care.
I have lost a lot and gained almost nothing from these efforts. I have been hurt immeasurably to pursue the rights of patients to their own records. I have seen callousness and cruelty and I kept doing this knowing that every single patient deserves better.
My fights won't make any front page HIPAA news. My "wins" in finally getting access to information withheld for years won't result in repercussion for the bad actors who withheld them intentionally. So this is the only space I get to convey them to you. And now it's up to you.
It's up to you to carry this knowledge forward and fight for yourself. It's up to you to demand your records in full. To add on to that "other" line in any request for your records "All records, including an accounting of disclsoures and information in the 'media tab'."
It's up to you to make sure you get all your records and to make complaints to the OCR when you don't. I can only tell you that the information exists, and you have a right to it. And I can give you this to problem solve issues: https://healthasahumanright.wordpress.com/2018/08/07/common-hipaa-issues/
None of this is legal advice. I cannot represent you and you cannot say "but Erin said." However, you can fight for yourself. And in fighting, know you are fighting for other patients too. Patients who need people to speak up so these gaps in compliance and enforcement stop.
None of this had to be and none of this has to be. But here we are. Know I've always fought for you. Know I've only ever wanted things to be better for you. Know that all these roads have been full of pain and my greatest wish is that you don't have to know the same pain.
