Cybercrime, hacking, phishing, data breech whether state to state compromise of national security or individually involving stolen credit card information, is now a daily headline continuum. How did we get here? It’s the internet. Why are we here? Because all that informa-tion has to go somewhere. It’s called “the cloud” a magical place to most of us where all this data is stored, protected. ..forever. Events have proven we can now collectively claim it is not protected.
My issue is with the loss of privacy of individual health records whether it’s doctor to doctor fax trans- missions or smart phone radiograph transmissions office to office. Information is power and the whole world wants a piece of you. Most of the data is banal unless you have had an abortion, an STD, cancer as more sensitive examples. Most recently, police have begun mining ancestryDNA data bank informationto profile crime suspects. We’ve done it to ourselves largely. We’ve treated the internet as this marvelous toy to entertain us. There was a time when we relied on a few media moguls to inform and entertain us. Now we can boast billions of people with an iPad tucked under their arm are virtual walking encyclope-dias. We demanded con-nection forgetting it’s a two way highway. Who did we trust with this information? Government? Partly. Every health practitioner you visit is required to submit your information, including diagnosis, for reimburse-ment. We have ten provin-cial systems, territories and the Feds all storing your data. Is it safe? Unlikely. Governments regularly share this information with researchers, pharmaceutical companies, insurance companies allegedly in sanitized form with your personal details redacted. My resources say that is an impossible claim borne out by the escape of so much information so regularly. The actual physical storage is a monopoly controlled by Google, Amazon and Facebook and their off-spring. As a result of U.S. Senate hearings involving the revelation of Facebook’s plan to anonymize millions of medical records and contrarian testimony it cannot be done, we have a clearer understanding how vulnerable we are. These three profit driven monopolies with minimal regulatory oversight have successfully taken a byte out of all of us.
The fundamental principle on which health care-patient interaction functions is confidentiality based on mutual trust. That trust is being eroded by government and internet obsession with acquisition and storage of personal information. Our privacy laws predate the inter-net by decades. But if we recognize the threat, we can protect ourselves. First step is to cattle prod inert government out of its lais-sez faire somnolence. The internet is the 21st century new kid on the block PUB – LIC UTILITY and must be regulated and monitored just like your municipal water supply. Secondly, we must emphatically address the sanctity of individual health records. Each per-son should be issued a data smart card to be kept in their personal possession. A second copy could be kept in the home or other-wise safeguarded. Perhaps a third with a primary caregiver of your choice. Child data would be issued to parent of record.
We need to purge the billions of bytes of health information stored in gov-ernment offices either hard copy or cloud and we need tough privacy laws requiring the individual owners per-mission (written consent) for any and every release for research or demographic or other third party purposes. The only transfer of infor-mation should occur when you individually hand the information to the health care person of the moment then retrieve. The science to do this is there now. We use numbers not names and you provide your pin on a visit per visit basis.
What began as an em-powerment of people is rapidly deteriorating into control of the individual but it’s not too late to apply the brakes.
Dr. David Carll