A friend recently asked whether or not he should provide his medical information to a third-party Internet-based company …
My answer was a resounding NO! Not at this time.
First, there was little or no likelihood that an emergency room physician would be able to securely access and use this information or that non-emergent doctors would accept this information as a true and correct record for incorporation into your permanent medical files.
Second, the company’s unilateral terms of service explicitly claimed that the service was being offered to individuals on an “as is” basis with no warrantees or guarantees. That the company is not responsible for any consequences should the data be unavailable, incomplete, erroneous or unusable. In an area-wide disaster, it is likely that communications would be impaired or that the service might become overloaded.
Third, the company’s revenue model was advertising-based so that your personal information would be scanned by computers to trigger advertising for additional medical goods and services.
Fourth, there were no real restrictions on how the information may be used and the right to offer your information in an aggregated form without personal identifiers to companies was reserved without an “opt out” provision.
Fifth, other than an encrypted link between you and the computer, there were no indications of how strong and thorough the company’s security efforts were and if all of the data was stored in encrypted files. Considering the recent security breaches of major credit card processors, one wonders if the company’s security even meets industrial and/or military standards. And there are any number of stories about medical information being mishandled, lost or stolen by internal employees or external vendors.
Sixth, the company’s terms of service indicated that they would be willing to turn over your medical records to any duly authorized requester and made no provision to notify you or allow you legally challenge or restrict the information request.
You do not want any third-party being able to access the totality of your medical records in response to a discovery order in a relatively minor matter.
Once electronic computer files are in the hands of an unknown third party, it is likely they may be shared with a “medical information bureau” or insurance exchange much in the same manner as your credit card information is stored and accessible by third parties.
Seventh, there is the possibility of even aggregated medical information being augmented by other information sources and data-mined in ways that you are no longer anonymous.
Eighth, you cannot trust any company. We have seen some of the most secure personnel records leaked for political reasons and/or misused for personal gain. Unless there is air-tight security legislation with significant mandatory penalties (and no plea bargaining), and sure punishment – even secure systems will remain porous.
The “emergency” use justification does not not stand up under scrutiny …
Con: In most emergency medical situations, the focus is on your present condition and not a snapshot of what has happened in the past. Therefore, emergency medicine doctors will always do their own tests and will regard patient-supplied information as suspect, supplemental information -- to be read as time permits.
Con: Adversely short-cut the diagnostic process by feeding the physician a plausible explanation of what appears to be happening. However, the human system is complex and many symptoms are shared among a multiplicity of conditions.
Pro: It might save time and money by allowing a physician to shortcut the diagnostic procedure and implement treatment in a more expeditious manner.
Pro: Having an historical record of medical information for comparison might indicate whether a condition is improving or worsening; or if a worsening condition is presenting additional symptoms.
There are significant technical and procedural issues to be overcome …
Con: Physicians are highly concerned with the integrity and fidelity of medical records. Copies of records gathered from multiple sources may be either incomplete or illegible. There is no index or audit trail to indicate the information has been inappropriately modified or deleted. Diagnosis codes and descriptions maybe in error or may have been altered for insurance purposes – either to provide the patient with coverage or to maximize the hospital or professional fees.
Con: There is little chance that any secure hospital or medical system would allow file downloads from untrusted Internet sources or insert third-party media (CD, DVD, USB-drive) into their systems.
Con: It is highly unlikely that past medical records can be successfully input into a system without a high degree of error. The scanning of old record sometimes produces illegible or incomplete records; sometimes with artifacts that are introduced by a dirty scanner. Even high quality image/text recognition software may produce questionable results when converting between paper and electronic text.
Con: Without some additional human input, documents may be incorrectly indexed and stored. Since mass document conversion efforts often involve off-shore data conversion companies, the results may be compromised by non-English speaking employees or lack of medically-trained personnel.
Bottom line …
If you want to prove to me that you are able to provide a third-party medical service, FIRST prove to me that you can provide a “new patient” form that is accepted at a large number of doctor’s offices.
At this point in time, there is only one company that I would provide my emergency medical information to on an unconditional basis.
“MedicAlert Foundation, a non-profit company founded in 1956 and headquartered in Turlock, California, maintains a database of members' medical information that is made available to medical authorities in the event of an emergency. Members supply critical medical data to the organization and receive a distinctive metal bracelet or necklace tag which is worn at all times. It can be used by law enforcement or emergency medical personnel to access their medical history and special medical needs.” <Source>
They have an outstanding record of providing medical information to first responders. Be sure to review their terms of service before signing up for their services.
I hope this answers my friend’s question and is of some use in your own planning.
For the record: I am not affiliated with or compensated by MedicAlert.
“Nullius in verba.”-- take nobody's word for it!
“Beware of false knowledge; it is more dangerous than ignorance.”-- George Bernard Shaw
“Progressive, liberal, Socialist, Marxist, Democratic Socialist -- they are all COMMUNISTS.”
“The key to fighting the craziness of the progressives is to hold them responsible for their actions, not their intentions.” – OCS "The object in life is not to be on the side of the majority, but to escape finding oneself in the ranks of the insane." -- Marcus Aurelius “A people that elect corrupt politicians, imposters, thieves, and traitors are not victims... but accomplices” -- George Orwell
“The key to fighting the craziness of the progressives is to hold them responsible for their actions, not their intentions.” – OCS
"The object in life is not to be on the side of the majority, but to escape finding oneself in the ranks of the insane." -- Marcus Aurelius
“A people that elect corrupt politicians, imposters, thieves, and traitors are not victims... but accomplices” -- George Orwell