Your Data on Disconnected Systems:   Challenges to Engagement and Better Outcomes

By Milton Nunez

Let me tell you something about Mary.

Mary is an accomplished professional who has managed a chronic condition all her life.  She sees four physicians: a gastroenterologist (GI), an endocrinologist, a gynecologist, and a primary care physician.   Excellent physicians from three health care networks.  Each network uses a different electronic health record (EHR) system and patient portal.  These systems are not connected.

Mary suffered from recurring, debilitating leg pains.  An urgent care center, an orthopedist, and imaging could not identify the problem.  Over 18 months, her magnesium (Mg) levels had been dropping.  The lab values resided on different EHR platforms, not counting the  lab vendors system.  With three  disconnected EHR systems, no one picked up the trend.  Finally, a routine visit to her GI revealed that her Mg values had reached critically dangerous levels.  She spent 18 hours in the ER.  The ER bill exceeded $15,000.  The root cause was a change in medication.  This solution required careful monitoring of labs, careful adjustments to her medication and frequent and precise communication between Mary and her doctors.

Mary also spends significant time coordinating her care, shuttling information between her doctors.  She spends too much time dealing with her insurance company.  She spends a small fortune on out-of-pocket medical expenses. 

As Mary’s story suggests, there is ample data being generated that, coherently curated, can present a complete picture of her health.  The problem is that doctors are often swamped with direct patient care responsibilities.  They often do not have the ability to both study the whole data picture and diagnose what is going on with the patient at that moment.  The ability  to anticipate and prevent potential future problems is severely impacted.  We are asking overworked clinicians to weave fragmented, complex data into a coherent narrative, on the spot.  This is not going to happen, and this problem will only grow worse over time.

The amount of data in EHRs, wearables, genetics and other platforms will explode.  This volume of data, growing almost exponentially, makes it difficult for patients and health care professionals to aggregate, synthesize and interpret data, quickly.  No problem, you may think, we’ll just hire more doctors and nurses.   Many nurses left the profession as a result of the COVID-19 pandemic.  They are likely not coming back.  The physician shortfall is expected to exceed 100,000 by 2030 forcing patients to take a greater role in the management of their health care.  (1)                  

This data explosion, coupled with growing labor shortages puts the onus on the patient to somehow aggregate and curate their health data across multiple platforms.  They then must understand it in a way that will make their next clinician visit, in person or via video, more meaningful.  This is a tall order. 

Existing clinical and delivery systems are designed with hospitals, clinics, revenue cycle, insurance companies, and clinicians in mind.  They have not been designed with a completely patient centered reference frame.  A redesign that more fully engages the patient can overcome these challenges.

Imagine Mary, with all her information at her finger tips, curated in her preferred language with alerts and suggestions, ready to more fully engage with highly qualified, expert physicians, in person or virtually anywhere.   Saving her time and money while achieving better outcomes.  Removing barriers to access created by geography, economics, and language, truly helping Mary live her healthiest life.

(1) “Artificial Intelligence in Health Care, Chapter 1, page 17  National Academy of Medicine, 2019”