Patient Generated Healthcare Data

I’ve often written about the IT strategies of Accountable Care Organizations and the need for a Care Management Medical Record which incorporates EHR data, patient generated data, customer relationship management features, protocols/guidelines and a workflow engine.

Although I have yet to see mature products in the marketplace, components are evolving that will fundamentally change the way we deliver care.

People know that I have been very transparent about my own medical history, as described in this Politico editorial.

Here’s how I’m using Patient Generated Healthcare Data in my own care management activities.

For the past 15 years, I’ve had a supraventricular tachycardia (SVT) - an AV nodal reentry issue.    My resting heart rate is 45-50 beats per minute.   On hot days, after I’ve eaten, my heart rate leaps to 170 beats per minute if I exercise vigorously then suddenly stop.     I perform a Valsalva Maneuver  and within a few minutes, my heart rate returns to normal.

I’ve never had any lasting consequences from this SVT.    I could take beta blockers, have an ablation of the ectopic pacemaker in my heart, or just accept that a few times per year I’ll have an arrhythmia.    I’ve chosen the later.

We’ve attempted to capture an ECG of my arrhythmia, but have never been successful.  We’ve tried a stress test, a holter monitor, and other wearable approaches.   It occurs too infrequently to capture.

We now have a solution.   I have attached an AliveCor ECG monitor to my iPhone 6.   The next time I have symptoms, I’ll just hold my phone and capture a perfect Lead I ECG.    From my phone, I can send it after capture to my PCP and the BIDMC electrophysiology expert for review.    It will be reassuring to know that I do not have episodic atrial fibrillation or an unstable ventricular tachycardia.

The cost of this technology is $70 dollars.

Although my body mass index has been constant at 22 for the past 15 years and my caffeine free, low sodium, vegan diet has kept me healthy, my genome is finally catching up to me and I’m starting to experience the essential hypertension (systolic of 140-150) that has been present in generations of both sides of my family.    Diet, exercise, blood pressure monitoring, vitamin D (may be helpful), and salt restriction are reasonable first approaches.   If they fail, then thiazide diuretics, calcium channel blockers or ace inhibitors are the next step, presuming there is no underlying root cause to treat.

As part of my initial assessment, I’m using a Withings Wireless blood pressure monitor with my iPhone 6.

I’m taking readings when I first wake up, before/after the Massachusetts Turnpike commute, at the end of the business day, and before bed.

Thus far, I’m seeing normal blood pressures on weekends after a day of farm work.  I’m seeing 140-150’s after the commute.   In case you’re not familiar with driving in Boston, it looks like this 

After a 12 hour day of meetings, I’ve seen a few spikes to 160, then a return to 130’s by bed time.

All of my measurements are uploaded automatically to the BIDMC electronic health record from my phone within 1 second.

The cost of this level of monitoring is $120.00

I also use a Withings Pulse to monitor my steps/elevation/distance/calories burned/pulse/pulse ox and a Withings Smart Body Analyzer to track my weight/body mass index.

All of this data is displayed with a variance analysis on my phone.

I’m not endorsing these products and have no financial relationship with either AliveCor or Withings.   I’m simply describing my experience that an iPhone 6 can become a middleware hub for healthcare information, enabling me to be the steward of my own data and share it with a healthcare system/provider at minimal cost.

The devices are easy to use and there is end to end data integrity from point of origin (the measurement) to point of use (the doctor).  

It’s clear to me that patient wellness (rather than treating sickness) will require more objective and subjective (pain score, mobility, mood) data than we gather today.   EHRs are not yet optimized for incorporating these novel data sources, but the Care Management Medical Record used for team-based coordination of life time care, must leverage the power of new healthcare enabled mobile devices.