Managing the Consumer Data Deluge

Joe Marion at Healthcare Informatics: “By now, everyone is aware of Apple’s recent announcement of an ECG capability on its latest watch.  It joins an expanding list of portable or in-home devices for monitoring cardiac and other functions.  The Apple device takes advantage of an established ECG device from AliveCor, which had previously introduced the CardiaMobile ECG capture device for Android and iOS devices.  More sophisticated monitoring devices such as implantable devices can monitor heart function in heart failure cases.

Many facilities are implementing video-conferencing type capabilities for patient consultation for non-life-threatening issues.  These might include the capture of information such as a “selfie” of a rash that is uploaded to the physician for assessment.

Given that many of these devices are designed to collect diagnostic data outside of the primary care facility, there is a growing tsunami in terms of the amount of diagnostic data that will need to be managed.  Since most of this data is created outside of the primary care facility, there are several questions that need to be addressed.

Who owns the data? Let’s take the case of ECG data captured from an Apple or AliveCor device.  The data is being acquired by the user, and it is initially stored on the watch or phone device, and may utilize some initial diagnosis application.  The whole purpose of capturing this data is to monitor cardiac function, particularly fibrillation, and to share it with a medical professional.  In the case of these devices the data can be optionally uploaded to an AliveCor cloud application for storage.  Thus, the assumption would be that the patient is the “owner” of the data.  But what if it is necessary to transmit this data to a professional such as a cardiologist?  Is it then the responsibility of the receiving entity to store and manage the data?  Or, is it assumed that the patient is responsible for maintaining the data?

Once data is brought into a provider organization for diagnostic purposes, it seems reasonable that the facility would be responsible for maintaining that data, just as they do today for radiographic studies that are taken.  If, for example a cardiologist dictates a report on ECG results, the results most likely end up in the EHR, but what becomes of the diagnostic data?

Who is responsible for maintaining the data? As stated above, if the acquired data results in a report of some type, the report most likely becomes the legal document in the EHR, but for legal purposes, many facilities feel the need to store the original diagnostic data for some period of time….

Who is the originator of the data collection? The informed patient may wish to acquire diagnostic data, such as ECG or blood pressure information, but are they prepared to manage that data?  If they are concerned about episodes of atrial fibrillation, then there may be an incentive to acquire and manage such data.

Conversely, many in-home devices are initiated by care providers, such as remote monitoring of heart failure.  In these instances, the acquisition devices are most likely provided to the patient for the physician’s benefit.  Therefore, the onus is on the provider to manage the acquired data, and it would become the facility’s responsibility for managing data storage.

Another question is how valuable is such data to the management of the patient?  For devices such as the Apple watch ECG capability, is it important to the physician to have access to that data over the long term?…(More)”.