Patient as Aggregator: The Logical Conclusion of Patient Owned Health Data?

Patient as Aggregator: The Logical Conclusion of Patient Owned Health Data?

The recent announcement that HealthKit in iOS 10 will support the storing and viewing of CCD / CDA documents has got me thinking.  Are Personal Health Records on a path to possible disruption of health system operated Electronic Health Records?

More specifically, if we believe the growing rhetoric of the health system that “patients own their data”, then we need to stop and ask some further questions.  If I own my own health information as a patient, why is it the job of government to aggregate that information on my behalf?  If I am concerned about the privacy of my health information, and doubt the ability of government to safely secure it (and provide useful services for me to access it), why wouldn’t I, the patient, take over the job of aggregating my own data?

Here in Australia we have near ubiquitous access to smartphones and the internet across all socio-economic and demographic groups.  What if, following an appointment, a GP sent a secure message with a Shared Health Summary to my mobile phone, and I stored the data right there?  What if, on discharge from hospital, the Discharge Summary was sent securely to my own personal EHR?  These clinical documents could sit on my mobile device, alongside my personally gathered data on medications adherence, Patient Reported Outcomes, consumer health device data and physical activity data.

When it is time for my next appointment I can quickly package up the health information requested by the health provider and send them a copy via secure messaging or grant them access.  Time-limited access, perhaps.

And in the longer term, why do we need secure messaging at all?  With the advent of Apple and Google Pay, why not create something analogous for health information exchange?  A standards-based NFC transfer of health information from health provider to patient and vice-versa.

This is all just musings, but I wonder if this is the true logical conclusion of patients owning their own health data?


2 thoughts on “Patient as Aggregator: The Logical Conclusion of Patient Owned Health Data?

  1. I agree that all health data should be patient owned, but crucially, if a person is in a car accident, has a heart attack, etc, the value in a digital health system is in the ability of attending medical staff to gain immediate access to all of that person’s health and pharmaceutical data and history.

    There need to be mechanisms for ensuring health data is available if the owner loses their mobile phone, forgets to backup their data, is unconscious or otherwise unable to grant access – for the well-being of the patient themselves. A complicated issue. This article is a great addition to the discussion.

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