PHRs: A personal experience

By Lynne Dunbrack, IDC Health Insights

Imagine my surprise when I logged onto my health plan's patient portal to discover I had an abnormal radiology result dating back to March 2010.   This is the first I am learning about it – 11 months later–and this information appears to contradict the phone call I received the day after my appointment.   I discovered this alarming result as I was conducting research for an upcoming research report entitled Update:  When will PHR Platforms Gain Consumer Acceptance?

When Microsoft HealthVault and Google Health launched in October 2007 and February - May 2008 respectively, I created PHRs using both platforms to try them out.   Fast forward to 2011.  I'm conducting research for the PHR platform report and discover I can connect my health plan data to my PHR. After resetting my password on the health plan's member portal, I begin exploring it, clicking on tabs for medication history, immunizations, procedures, illnesses/conditions and health events, populated by medical claims submitted by my providers.  This is when I discover a cryptic entry indicating an abnormal radiology result with nothing to click on to see more detail.

A call to my primary care physician Wednesday afternoon reaches the answering service since it's after 4:30.  A call to the imaging center allays some concern -– they would have sent a certified letter if I ignored a phone call requesting a follow-up exam. However, they do not have access to my medical records to confirm the results one way or the other.   The health plan's customer support representative explains that they simply report the data submitted on medical claims and cannot provide more information since they don't have the actual report.  He recommends contacting my physician to correct any misinformation presented in the member portal. 

Thursday morning I spoke with my PCP's office who confirms my radiology report did not indicate any cause for concern.  A call to the hospital's radiology department confirms the same thing and she gives me the phone number for its billing service to determine what information was sent to the health plan. The billing clerk tells me that she cannot provide the billing codes over the phone because it would violate HIPAA, but that she would mail me a copy of what they sent to my health plan and that I need to call the health plan again to address this issue. 

Several questions came to mind as I pondered this situation:

  • Does the abnormal radiology report belong to another patient and was she notified of the results in a timely fashion?  A false positive for me might mean a night of fitful sleep, a false negative for her could be catastrophic.
  • How would the typical consumer with average medical literacy react to finding this information?  As a healthcare analyst, I have a good sense of the data flow between providers and payers, and understand that claims data has its limitations for presenting clinical information.  So while concerned, I am fairly confident this is a data issue, not a medical issue. 
  • If this information is incorrect, and my permanent record is not corrected, could this limit future insurance options?  Fortunately, Massachusetts is one of a handful of states which does not allow payers to deny coverage based on pre-existing coverage.  However, consumers in other states have had their insurance rescinded when their health plans suspected that they had a pre-existing condition.  And until 2014 when the provisions affecting pre-existing conditions and rescissions in the Affordable Care Act (as it stands today) becomes effective, this could be cause for concern if I lived in another state and had to change health insurers.

Uptake of personal health records (PHRs) by consumers has been relatively slow.  Major barriers to widespread adoption include consumer concerns regarding privacy and security of health information online, lack of electronic data to populate PHRs thus requiring consumers to manually enter and update their health information and lack of interoperability and portability when consumers change health plans, jobs or providers. 

Furthermore, medical information, whether sourced from clinical or claims adjudication systems, is often challenging for the lay consumer to interpret.  At the end of the day, my abnormal radiology result did not indicate cancer (my original concern) but a finding of a benign anatomical variation that is "not normal" for the general population, but "normal" for me.   This explanation courtesy of a clinician friend, not the six people I spoke with from my health plan or providers.

Data issues such as this one underscore how challenging it is to create health records for consumer consumption.  But they also underscore how important it is for consumers to be aware of what is in their medical records and what data is being shared with other stakeholders in the ecosystem.  Just as consumers review their credit card bills for errant charges and "fiscal health," so too should they review their "healthcare transactions."  A personal health record provides them this opportunity, and healthcare payers and providers must be prepared to respond to consumer inquiries about what the data means and how to correct misinformation.

Update:  When will PHR Platforms Gain Consumer Acceptance? will be published in March 2011.  The report will provide an update on Dossia, Google Health and Microsoft HealthVault and will include results regarding consumer attitudes toward PHRs.

  Lynne A. Dunbrack is the program director for the IDC Health Insights' Connected Health IT Strategies program.

Copyright 2011 IDC, all rights reserved.

Copyright © 2011 IDG Communications, Inc.

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