When is patient data not patient data? When a patient wants his or her ICD data

By David Harlow

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 is 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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