A common jibe in academic circles is that the best way to keep a secret is to publish it. The argot of specialties and their practitioners’ acronym-laden prose make journal articles incomprehensible to all but ‘insiders’. So it is also for most medical and the few health records that exist. Each is written by a doctor, nurse, or other practitioner (amazingly many still in longhand) primarily to jog his or her memory about salient issues when next the patient is seen and also to inform other professionals about his or her interactions with a patient. Impenetrable as they may be to all but the cognicenti, including their owners, their confidentiality is also fiercely protected by privacy legislation and a virtual thicket of rules and regulations overseen by armies of bureaucrats and ultimately courts wielding stiff penalties for failing to keep everything safe and secure from prying eyes.
What’s in there that’s so secret? Most would agree that their medical and health records should be as secret as their financial records. With respect to the latter, well accepted policies and tried technologies have been in place for many years. The Haligonian on a visit to Vancouver pulls out her bank card in a public place without a second’s thought and uses her PIN to access her financial records to get the money or credit she needs to pay for her lunch. Contrast that with what would happen were she to get hit by a bus on leaving the restaurant. The Nova Scotia MSI card in her purse would assure the Vancouver’s emergency room triage person that she is insured in a Canadian province, but that’s it – not even the patient would have access to any of those deep, dark secrets like her blood type, current medications, or even the ‘phone number of her next of kin or family physician back home. The physicians and nurses caring for her in the ER would have to go on only what she can remember; and she has just been hit by a bus! Perhaps she’s unconscious; somebody would have had to rifle through the private stuff in her purse to get at that MSI card, stuff she may consider far more deserving of secrecy than whatever is contained in her health/medical record.
Our current privacy fetish is not only a threat to Canadians’ health and well being, it is also a threat to reform of our very healthcare “system”. It denies society access to the aggregated data that could and should be derived from analyses of our collective medical and health records, data that could give governments and the public the evidence needed to govern and manage our ‘system’ better. That denial comes at a very high and unnecessary price, unnecessary because the technology is readily available to achieve the same end. It is already widely used in the financial industry to assure the confidentiality and security of every individual’s records and at the same time make available anonymised data for analyses, system improvement, and everybody’s benefit.
Ironically, in addition to the weather and Presidential antics south of our border, their health, diseases, conditions, and current interactions with doctors and other healthcare providers are among Canadian’s most frequent topics of conversation. The exceptions are that generally people don’t talk about their mental illnesses except to fellow sufferers or about venereal diseases and other matters related to sexuality. Sadly, stigma still attaches to both of these taboo subjects. A good argument can be made that more discussion, facilitated by more extensive and better data on the incidence and successful management of such conditions, would serve to decrease that stigma and improve greatly the interactions of sufferers with people who still consider mental illness, addiction, and sexually transmitted diseases as somehow shameful.
Some argue that were medical and health records not to be as tightly closed as they are, insurance companies could somehow get access to an individual’s record and deny him or her coverage because of a pre-existing condition. Those seeking insurance coverage are required to disclose their pre-existing conditions. It is not the policy role of governments in assuring the confidentiality of health and medical records to facilitate the submission of fraudulent insurance applications. And in any case, medical and health records should not be ‘open’; they should be, like financial records, centrally aggregated and stored and protected by a PIN in the hands of their owners.
With respect to the secrecy of medical and health records, the price we’re paying is both too high and unnecessary.
Authored by members of the Queen’s Health Policy Council: