I was reading a book the other day and it suggested that sometime in the near future we will all have a personal medical record archive. Such an archive would be a formal record of every visit to a healthcare provider, with every x-ray, MRI, CatScan, doctor’s note, blood analysis, etc. that’s ever done to a person.
Such data would be our personal record of our life’s medical history usable by any future medical provider and accessible by us.
Who owns medical records?
Healthcare is unusual. For any other discipline like accounting, you provide information to the discipline expert and you get all the information you could possibly want back, to store, send to the IRS or or whatever, to do with it as you want. If you decide to pitch it, you can pretty much request a copy (at your cost) of anything for a certain number of years after the information was created.
But, in medicine, X-rays are owned and kept by the medical provider, same with MRIs, CT scans, etc. and you hardly ever get a copy. Occasionally, if the physician deems it useful for explicative reasons, you might get a grainy copy of an X-ray that shows a break or something but other than that and possible therapeutic instructions, typically nothing.
Getting Doctor’s notes is another question entirely. It’s mostly text records in some sort of database somewhere online to the medical unit. But, mainly what we get as patients, is a verbal diagnosis to take in and mull over.
Personal experience with medical records
I worked for an enlightened company a while back that had their own onsite medical practice providing all sorts of healthcare to their employees. Over time, new management decided this service was not profitable and terminated it. As they were winding down the operation, they offered to send patient medical information to any new healthcare provider or to us. Not having a new provider, I asked they send them to me.
A couple of weeks later, a big brown manilla envelope was delivered. Inside was a rather large, multy-page printout of notes taken by every medical provider I had visited throughout my tenure with this facility. What was missing from this assemblage was lab reports, x-rays and other ancillary data that was taken in conjunction with those office visits. I must say the notes were comprehensive and somewhat laden with medical terminology but they were all there to see.
Printouts were not very useful to me and probably wouldn’t be to any follow-on medical group caring for me. However the lack of x-rays, blood work, etc. might be a serious deficiency for any follow-on treatment. But, as far as I was concerned it was the first time any medical entity even offered me any information like this.
Making personal medical records useable, complete, and retrievable
To take this to the next level, and provide something useful for patients and follow-on healthcare, we need some sort of standardization of medical records across the healthcare industry. This doesn’t seem that hard, given where we are today and need not be that difficult. Standards for most medical data already exist, specifically,
- DICOM or Digital Imaging and Communications in Medicine – is a standard file format used to digitally record X-Rays, MRIs, CT scans and more. Most digital medical imaging technology (except for ultrasound) out there today optionally records information in DICOM format. There just so happens to be an open source DICOM viewer that anyone can use to view these sorts of files if one is interested.
- Ultrasound imaging – is typically rendered and viewed as a sort of movie and is often used for soft tissue imaging and prenatal care. I don’t know for sure but cannot find any standard like DICOM for ultrasound images. However, if they are truly movies, perhaps HD movie files would suffice for a standard ultrasound imaging file.
- Audiograms, blood chemistry analysis, etc. – is provided by many technicians or labs and could all be easily represented as PDFs, scanned images, JPEG/MPEG recordings, etc. Doctors or healthcare providers often discuss salient items off these reports that are of specific interest to the patients condition. Such affiliated notes could all be in an associated text file or even a recording made of the doctor discussing the results of the analysis that somehow references the other artifact (“Blood chemistry analysis done on 2/14/2007 indicates …”).
- Other doctor/healthcare provider notes – I find that everytime I visit a healthcare provider these days, they either take copious notes using WIFI connected laptops, record verbal notes to some voice recorder later transcribed into notes, or some combination of these. Any of such information could be provided in standard RTF (text files) or MPEG recordings and viewed as is.
How patients can access medical data
Most voice recordings or text notes could easily be emailed to the patient. As for DICOM images, ultrasound movies, etc., they could all be readily provided on DVDs or other removable media sent to the patient.
Another and possibly better alternative, is to have all this data uploaded to a healthcare provider’s designated URL, stored in a medical record cloud someplace, allowing patient access for viewing, downloading and/or copying. I envision something akin to a photo sharing site, upload-able by any healthcare provider but accessible for downloads by any authorized user/patient.
Medical information security
Any patient data stored in such a medical record cloud would need to be secured and possibly encrypted by a healthcare provider supplied pass code which could be used for downloading/decrypting by the patient. There are plenty of open source cryptographic algorithms which would suffice to encrypt this data (see GNU Privacy Guard for instance).
As for access passwords, possible some form of public key cryptography would suffice but it need not be that sophisticated. I prefer to use open source tools for these security mechanisms as then it would be readily available to the patient or any follow-on medical provider to access and decrypt the data.
Medical information retention period
The patient would have a certain amount of time to download these files. I lean towards months just to insure it’s done in a timely fashion but maybe it should be longer, something on the order of 7-years after a patients last visit might work. This would allow the patient sufficient time to retrieve the data and to supply it to any follow-on medical provider or stored it in their own, personal medical record archive. There are plenty of cloud storage providers I know, that would be willing to store such data at a fair, but high price, for any period of time desired.
Medical information access credentials
All the patient would need is an email and/or possible a letter that provides the accessing URL, access password and encryption passcode information for the files. Possibly such information could be provided in plaintext, appended to any bill that is cut for the visit which is sure to find its way to the patient or some financially responsible guardian/parent.
How do we get there
Bootstrapping this personal medical record archive shouldn’t be that hard. As I understand it, Electronic Medical Record (EMR) legislation in the US and elsewhere has provisions stating that any patient has a legal right to copies of any medical record that a healthcare provider has for them. If this is true, all we need do then is to institute some additional legislation that requires the healthcare provider to make those records available in a standard format, in a publicly accessible place, access controlled/encrypted via a password/passcode, downloadable by the patient and to provide the access credentials to the patient in a standard form. Once that is done, we have all the pieces needed to create the personal medical record archive I envision here.
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While such legislation may take some time, one thing we could all do now, at least in the US, is to request access to all medical records/information that is legally ours already. Once all the healthcare providers, start getting inundated with requests for this data, they might figure having some easy, standardized way to provide it would make sense. Then the healthcare organizations could get together and work to finalize a better solution/legislation needed to provide this in some standard way. I would think university hospitals could lead this endeavor and show us how it could be done.
Am I missing anything here?