Ask anybody, “what’s in your medical record?” Chances are nobody has ever seen theirs; they don’t even have a clue where it is. Most people’s records are scattered here and there among the offices of their family physician, dentist, optometrist, physiotherapist, some specialist physicians and surgeons, one or more hospitals, a home care provider, etc., many of them in different cities, provinces, and sometimes countries. Chances are also that few people know that the records are their personal property – they own them. They have been led to believe over the years that those files behind the desk or on the shelves behind the doctor’s receptionist or increasingly on that computer in the examining room belong to the providers who provide them with safekeeping; they believe also, correctly, that healthcare’s providers control access to them. That patients themselves do not have free access to their own health/medical records and that they don’t control whom else should have that privilege is bizarre.
As it stands at present, despite the marvels of ‘cloud computing’, anybody (including hospitals and other providers) would be hard pressed to pull together his or her medical record, even that extending back only for the last couple of years. As for a more inclusive health record, that would be nearly impossible. Yet the technology exists to make both, health and medical records, readily available to everybody in Canada. It can and should be deployed to do so.
In the first place, ensuring the accuracy and completeness of the information in those records would be a great idea; doing so could even be a life-saver. Who better to do it than the individual whose record it is? It is also the ambition of health service providers everywhere, and indeed of the so-called “systems” of which they are members, to be people-centered. It is pretty hard to claim progress toward that goal if the people most intimately involved, patients, don’t themselves have as ready access to their own records as those treating them. Why should those same patients not also exercise control over who else can have access to their records, whether in whole or in part, when, and under what circumstances? They do have full access to and control over their financial records. It is hard to conceive of reasons why they should not have the same for their health and medical records.
Healthcare’s providers are increasingly working in teams, especially in primary care. The day of the solo practitioner’s well-known personal collection of patients is fast being replaced by the team of physician, nurse, dietitian, physiotherapist, pharmacist, social worker, etc., working with a much larger number of patients and families, often seeing them in clinic, frequently after-hours. Having access to each patient’s electronic health/medical record in these circumstances is essential for the members of the provider team and certainly more convenient for the patient than repeating his or her story over and over again.
Some would claim that medical records are too complicated and written in terms too esoteric for all but a few patients to understand. That’s a great argument for abandoning obscurantist professional argot in favour of writing medical and health records in plain language. That claim also fails against the growing reality that Canadians are, on the whole, well educated. They are also, courtesy of the internet, made increasingly savvy through websites, patient support groups, and the like about the diseases and conditions that affect them and members of their families. With access to a lot more knowledge about their health and diseases than they did even a few years ago, yesteryear’s paternalism is passé. It is also highly desirable for patients to be much more involved in what amounts to partnerships with the providers of healthcare services to manage their own care. How better to do so than for patients and their providers to work together to keep track of their progress and setbacks in a health and medical record readily available to both? This will become increasingly important with the adoption of recently invented wearable devices to record activity measures and physiological functions as patients go about their daily lives.
Patients are the principal stakeholders in healthcare. They need and should have access to and control of their health and medical records. There is no reason, technological or otherwise, why they should not.
Authored by members of the Queen’s Health Policy Council: