Is there such a thing as a "medical record"
May 7, 2019 9:41 PM   Subscribe

What is a person's "medical records"? If a person attends say, a GP's office and a hospital, and has a separate Patient Portal for each, in my experience these are separate systems. You can see the history with each provider, but not access general results throughout one's life.

Thus my question -

Is there such a thing is a "unified" medical record? With EVERYTHING?

I want a copy of mine, but don't want to pay anything. Is this realistic?

Will I have to hunt down multiple records, or is there a way to just get the whole thing? Just the whole record.

posted by karmachameleon to Health & Fitness (16 answers total) 2 users marked this as a favorite
Basically, yes, you have to get your records from all the offices that have them. There may be services that do this or combine them on your behalf, but, there's no unified format for records anyway so it would still be just lists of individual doctors' notes. In my experience there is at most a nominal fee the doctor's office charges for copying your records for you.
posted by Lady Li at 9:49 PM on May 7, 2019 [4 favorites]

What you can do if you have a doctor for now-Get as many consent forms as you need from your memory of medical visits. Get your doctor's office to mail the forms out with your signature, to these places. Bring stamped, addressed envelopes to your doctor's office. You can make a personal note that you are consolodatiing your records. Then your current doc has everything and their office will share with you. I have never seen offices charge each other to share info at a doctor's request.

Then your medical records are complete, and if you move away from your current physician, they can forward the record to your new care provider. There has to be some security between practitioners that the medical records they are viewing, are authentic. Yet your pbysician's office is bound, legally, to share your information with you.
posted by Oyéah at 10:09 PM on May 7, 2019 [6 favorites]

What country are you in?
posted by caek at 10:30 PM on May 7, 2019 [3 favorites]

Ok great! Ok - when I go to a new doctor or new hospital, they DON'T necessarily have a record of any other visit? But they MIGHT? Is this because certain platforms or technologies are shared?

(This is the US).
posted by karmachameleon at 10:35 PM on May 7, 2019

When you go to a new doctor or new hospital, it's highly unlikely they have any of your records unless they're part of a large hospital system.

The exception in the US is big managed-care HMOs. My friend left Kaiser Permanente after going there from birth-24 years old and they literally handed him a big stack of papers on his way out the door: his Medical Record. He said it was interesting reading, and they really kept EVERYTHING, from his Apgar scores on up. I actually tried to request mine later on, as I'd gone to Kaiser for almost as long, but after a certain period of inactivity they back them all up to tape or destroy them - either way much harder to request than if you're an active patient.
posted by potrzebie at 11:40 PM on May 7, 2019

I have lots of doctors and lots of different records. Some of my doctors have recently joined a network for information sharing; if I go to one of those doctors, and if I have given them written permission to do so, they'll all be informed when there's, say, a new medication added to my list. But this is a very recent development, as in less than six months.

I left one doctor after having seen him for about a decade. I wanted a copy of my records in order to have one document that I knew was in there because I had quickly looked through my file once when I was left alone in the exam room. I wanted it because it confirmed my suspicion that the doctor had caused me permanent, significant damage by putting off referrng me to a specialist for surgery. The specialist sent my doctor a letter chewing him out for it, but neither of them would come out and say so to my face when asked. I'm sure that the first doctor was concerned about liability and that the the second one didn't want to do anything that could end up hurting a colleague.

When I asked for my records, They said I could either get them for a copying fee of a dollar a page, and I had to get all the pages or nothing. The file was so big it would have been hundreds of dollars. So I gave up and just had them send it to my new doctor which they do for free.

For my own reference, I keep sort of a running journal with diagnoses, procedures, medications, relevant named and dates, etc. It helps a lot when I'm filling out new patient forms.
posted by The Underpants Monster at 12:25 AM on May 8, 2019

Generally, no, there's no one "unified" medical record, unless you're a part of a big HMO or other integrated health systems like Kaiser or Geisinger. Recently, there's been a lot of momentum building behind interoperability, which basically boils down to figuring out how to get different systems to talk to each other; an example implementation is Epic's Care Everywhere (link to hospitals/systems that have signed up). But this doesn't, AFAIK, get all your data in one place, as the emphasis is on better care coordination, not creating a central repository, since the external data are view-only; your hospital can't pull in your history and add it to your record. Things might change soon though!
posted by un petit cadeau at 1:35 AM on May 8, 2019 [1 favorite]

To tack on to un petit cadeau's response, my health system uses Epic and has CareEverywhere. The records available from other health systems via CareEverywhere is....spotty, at best. This can include a health system opting to not share records from particular specialties (Genetics records is one good example) and inpatient/hospitalization records not being included at all.
posted by kuanes at 3:51 AM on May 8, 2019

You are legally entitled to access to your health records in the US. ONC has put together a guide to getting and using your records.
posted by galvanized unicorn at 4:24 AM on May 8, 2019 [3 favorites]

It's really really spotty at best, and depending on your age and the transition to electronic medical records for your physicians, some of it can be handwritten and/or manually typed.

If you have lived in the same place and accessed fairly consistent health systems you are likely to be able to get way more data.

There is no way to get a whole record unless your whole record is with one provider only.

Records can be destroyed after a period of time, so finding things from say 20 years ago can present even further complications.
posted by AlexiaSky at 4:33 AM on May 8, 2019 [1 favorite]

From your question, it appears that you want to ensure that YOU will have access to the records "throughout [your] life."

You will not want to depend on any provider's system to ensure that. You should obtain your records as discussed above and organize them for yourself, so that you have the records and access in a meaningful way.

Electronic medical record systems have been a revolution but the results when printed out are often not readily understood, even by health care personnel.
posted by megatherium at 4:56 AM on May 8, 2019 [1 favorite]

There are state and regional health information exchanges and health information organizations that receive care records from participating facilities and assemble them into a unified record.

The point is, for example, if you arrive at an ER unconscious they can see your history and when you go to your next Dr. appt she can see what happened with your ER visit. It also allows doctors to see all of your test results and thereby avoid ordering the same test that was already performed elsewhere.

Not every state/region has one and they vary in their completeness. I'm not sure what policies tend to be regarding patients getting a copy.

Also, your patient portals may allow you to download your records from that facility in electronic form. It will contain basically the same data you can see in the portal.
posted by duoshao at 5:34 AM on May 8, 2019 [1 favorite]

I was going to jump in and mention health information exchanges but duoshao beat me to it. The only thing I have to add is that, in many cases, these databases are just now ramping up. The ones I know of contain only essential information such as lists of allergies so that emergency departments can deal with you if you are unconscious.

There are some interesting medical systems trying to address this problem of information exchange. See Camden Coalition as an example. Small system, motivated individuals in different settings, lots of work involved to coordinate and collaborate.
posted by eleslie at 6:01 AM on May 8, 2019

My experience with this recently has been that with computerized records, even a few years of health care now generate way more data than a new provider will be able to read through.

I had my old medical records sent to my new GP. It got her hundreds of computer-generated pages faxed over, with no useful summary and no way to import them into their own record system. My new GP (who is generally super attentive to detail) glanced at them, shrugged, and ignored them, and we went back to relying on my own memory for details of my past care. She had no time to do anything else.
posted by nebulawindphone at 6:01 AM on May 8, 2019 [1 favorite]

The idea of a "medical record" as a thing that someone can magically pull up and read, is right up there with your middle school infractions becoming part of your "permanent record" that your boss is going to look over when it's time for your promotion when you're 35. It doesn't exist.

You have medical records, plural.

Big healthcare systems will sometimes have Electronic Medical Record (EMR) systems that are reasonably large—the big hospital chain in my area in theory has an EMR system that is supposed to cover both the hospital itself and its associated outpatient offices, but in practice it's hilariously bad and really only works within the hospital, and repeated visits to the hospital often generate duplicate 'patient' records—but in general I would assume that each office you go to has a separate system and that these systems don't share information unless you either hand-carry papers from one to the other, or someone uses a fax machine to send information between them.

There are exceptions. Kaiser has a decent EMR implementation that I have seen work, in practice, and actually bring up GP-visit records during an emergency visit. It was like
seeing goddamn black magic. (Seriously, I would have been less impressed if the doctor had performed actual necromancy.) But even Kaiser's system, I am told, is segmented: East Coast Kaiser doesn't talk to West Coast Kaiser, for reasons, or at least they didn't at one point.

Over the years there have been various efforts by insurance companies, technology companies, medical standards bodies, and various others to produce centralized repositories for medical records, and data-interchange formats to facilitate information sharing. AFAICT the various efforts have mostly produced a lot of esoteric designed-by-committee "architecture" documents and competing "standards" but very few actual interoperable products. Microsoft Healthvault was one attempt to produce a consumer-centric centralized EMR system—it's set to be turned off in Nov 2019. Smashing success.

Will I have to hunt down multiple records, or is there a way to just get the whole thing? Just the whole record.

Oh sweet summer child. You will have to hunt. And that's assuming the records actually exist and haven't been purged, which happens sooner than you'd think.

Do yourself a favor and get a fax machine or an inbound fax number, for starters; actually obtaining paper copies is expensive (fun fact: medical providers in the US are allowed to charge you for your own records!). Some offices will send faxes out for free, though, because they're not generally allowed to charge other medical providers and the dominant way to share information is via fax. Medical imaging—digital x-rays, MRIs, CT scans, etc.—are most successfully shared via physical CD-ROM.

Basically every office / healthcare chain will have a different release form that you'll have to obtain, sign, and send in before they'll send you your records. (Although with this flimsy piece of paper, they'll basically send whatever they have to any fax number you care to put down!) Some offices will just ignore you, in which case having your current doctor's office call or fax them may unstick things. (The dominant attitude I've run into in obtaining my own records is that only cranks want their own records and clearly I should just trust The System to do its job.)

Recommendations: I strongly feel that everyone should keep a copy of their own medical records, because nobody else is doing it and TBH there's no obvious trustworthy organization that's likely to start doing so in the near future. This is especially important if you have chronic or longterm health issues or frequently see multiple doctors across different healthcare companies. I try to get copies of everything at the time of service—diagnostic test results, especially—and if I'm left in a room with a folder with my name on it, you can damn well bet I'm going to be going through it with my smartphone, scanning everything. The further you go from the time of service, the more of a pain getting good and complete copies is.

I keep everything digitally, although if you do not have a good backup scheme there is a strong argument to be made for keeping it on paper in a file drawer. People tend to have computer failures resulting in data loss more often than their houses burn down.

I just keep everything in a folder, organized by date and provider in the filename (YYYY-MM-DD_providerName_description.pdf), sometimes with a text file here and there to explain to future-me what the hell happened, or mark things (injuries especially!) for which there's no formal record. If you are okay from a privacy perspective with keeping your records in a cloud service like Dropbox, they do some cool OCRing that can assist you in searching at word-level (e.g. look for the word "vaccine" or "MMR") across many documents.
posted by Kadin2048 at 12:45 PM on May 8, 2019

Please note that individual US states may have different retention schedules (that is, how long a medical facility has to preserve your medical record). For example, iin Georgia, where I live, patient records are destroyed after ten years have passed, in accordance with regulations and laws in the state where you received care.
posted by catlet at 3:46 PM on May 11, 2019 [1 favorite]

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