Joining Matthew Holt on #THCBGang on Thursday December 19 at 1pm PST 4pm EST are three leaders in the patient movement Hugo Campos (@HugoCampos); Gilles Frydman (@GillesFrydman); and ePatient Dave deBronkart (@DavedeBronkart). They will be bring us up to speed on the very latest in patients using AI.
You can see the video below live (and later archived) & if you’d rather listen than watch, the audio is preserved as a weekly podcast available on our iTunes & Spotify channels.
It is as natural for doctors, hospitals, health plans and others to aggressively affirm their “patient-centeredness” as it is for politicians to loudly proclaim their fealty to the hard-working American middle class. Like the politicians, the health care professionals no doubt believe every word they say.
The most accurate measure of “patient-centered” care, however, lies not in intentions but implementation. Ask one simple question – what effect does this policy have on patients’ ability to control their own lives? – and you start to separate the revolutionary from the repackaged. “A reform is a correction of abuses,” the 19th-century British Parliament member Edward Bulwer-Lytton noted. “A revolution is a transfer of power.”
With that in mind, which purportedly patient-centric policy proposals portend a true power shift, and which are flying a false flag?
Falling Short Of Shifting Power
The two most prominent examples of initiatives whose names suggest power sharing but whose reality is quite different are so-called “consumer-driven health plans” (CDHP) and the “patient-centered medical home” (PCMH). Both may be worthy policies on their merits, but their names are public relations spin designed to put a more attractive public face on “defined contribution health insurance” and “increased primary-care reimbursement.
The latest news story to examine the issue of patient access to implantable cardiac defibrillator data (a variation on the theme of “gimme my damn data”) is an in-depth, Page One Wall Street Journal story featuring Society for Participatory Medicine members Amanda Hubbard and Hugo Campos. They have garnered attention in the past – one example is another piece on Hugo on the NPR Shots blog about six months back. The question posed by these individuals is simple — May I have access to the data collected and/or generated by the medical device implanted in my body? — but the responses to the question have been anything but. It is important to note that not every patient in Amanda’s or Hugo’s shoes would want the data in as detailed a format as they are seeking to obtain, and we should not impose the values of a data-hungry Quantified Self devotee on every similarly-situated patient. Different strokes for different folks.
The point is that if a patient wants access to this data he or she should be able to get it. What can a patient do with this data? For one thing: correlate activities with effects (one example given by Hugo is his correlation of having a drink of scotch with the onset of an arrhythmia — correlated through manual recordkeeping — which led him to give up scotch) and thereby have the ability to manage one’s condition more proactively.
We can get copies of our medical records from health care professionals and facilities within 30 days under HIPAA — and within a just a few days if our providers are meaningful users of certified electronic health records (it ought to be quicker than that … some day). In some states now, and in all states sometime soon (we hope), we can get copies of our lab results as soon as they are available to our clinicians.
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