E-patient Update: Remote Monitoring Leaves Me Out of The Loop

As some readers may recall, I don’t just write about digital health deployment — I live it. To be specific, my occasional heart arrhythmia (Afib) is being tracked remotely by device implanted in my chest near my heart. My cardiac electrophysiologist implanted the Medtronic device – a “loop recorder” roughly the size of a cigarette lighter though flatter — during a cardiac ablation procedure.

The setup works like this:

  • The implanted device tracks my heart rhythm, recording any events that fit criteria programmed into it. (Side note: It’s made entirely of plastic, which means I need not fear MRIs. Neat, huh?)
  • The center also includes a bedside station which comes with a removable, mouse shaped object that I can place on my chest to record any incidents that concern me. I can also record events in real time, when I’m on the road, using a smaller device that fits on my key ring.
  • Whether I record any perceived episodes or not, the bedside station downloads whatever information is stored in the loop recorder at midnight each night, then transmits it to the cardiac electrophysiologist’s office.
  • The next day, a tech reviews the records. If any unusual events show up, the tech notifies the doctor, who reaches out to me if need be.

Now, don’t get me wrong, this is all very cool. And these devices have benefited me already, just a month into their use. For example, one evening last week I was experiencing some uncomfortable palpitations, and wondered whether I had reason for concern. So I called the cardiac electrophysiologist’s after-hours service and got a call back from the on-call physician.

When she and I spoke, her first response was to send me to my local hospital. But once I informed her that the device was tracking my heart rhythms, she accessed them and determined that I was only experiencing mild tachycardia. That was certainly a relief.

No access for patients

That being said, it bugs me that I have no direct access to this information myself. Don’t get me wrong, I understand that interacting with heart rhythm data is complicated. Certainly, I can’t do as much in response to that information as I could if the device were, say, tracking my blood glucose levels.

That being said, my feeling is that I would benefit from knowing more about how my heart is working, or failing to work appropriately in the grand scheme of things, even if I can’t interpret the raw data of the device produces. For example, it would be great if I could view a chart that showed, say, week by week when events occurred and what time they took place.

Of course, I don’t know whether having this data would have any concrete impact on my life. But that being said, it bothers me that such remote monitoring schemes don’t have their core an assumption that patients don’t need this information. I’d argue that Medtronic and its peers should be thinking of ways to loop patients in any time their data is being collected in an outpatient setting. Don’t we have an app for that, and if not, why?

Unfortunately, no matter how patients scream and yell about this, I doubt we’ll make much progress until doctors raise their voices too. So if you’re a physician reading this, I hope you’re willing to get involved since patients deserve to know what’s going on with their bodies. And if you have the means to help them know, make it happen!

About the author

Anne Zieger

Anne Zieger

Anne Zieger is a healthcare journalist who has written about the industry for 30 years. Her work has appeared in all of the leading healthcare industry publications, and she's served as editor in chief of several healthcare B2B sites.

2 Comments

  • You shouldn’t generalize about doctors that way… Most doctors would be happy for you to have your information and it should be included in your “shareable electronic medical record.” The hospital and the hospital system, as well as the myriad of other (multiple) people that make money off of your study – don’t want your information to be shareable or for you to have access to it. Most likely some excuse about HIPAA will be invoked as to the reason that it was not able to be shared. Ironically the information is yours and you should have it, unfortunately the chart and the paper and the computer that the information is stored on belong to the hospital or hospital system. This concept is well known in medicine to Medical people, in the past hospitals would charge patients money to copy their information when it was in paper charts. Now all the rage is having patient portals which give you information access whoever is not easily transportable as it is frequently in PDF or HTML. Universal medical record ( Holy Grail or pipe dream) solve this problem immediately, along with most other problems in medical health care but actually sharing medical records, results, medication lists, allergies… unfortunately current Medical Systems and Insurance Companies haven’t figured out how to monetize that, so they stand to lose incredible sums of money with actually sharing information. Please watch some informational videos on YouTube by Dr Eric Topal on this subject. It’s not your doctor in control of this – it is the medical, hospital and insurance systems. Doctors haven’t had very much control of this for a long time…. I apologize for poor writing – using phone to write this… 🙂

  • the purpose of patient portal access to Medical info. is to better incorporate the patient into the Care Plan devised by the doctor and patient to generate better habits, better monitoring, better patient compliance and overall better health for the patient. Allowing access to some info however can create interference in the proper care of the patient. For example, if patients had access to the info from the mentioned device, what may not be alarming to the Cardiologist (because of his knowledge of the readings based on training), may be of great concern(unnecessarily) to the untrained patient resulting in increased anxiety to the patient, increased calls to the office, increased tension between physician and patient, and possible termination of the Dr-Patient relationship. Ultimately interfering with or interrupting the original Care Plan.

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