My Electronic Health Records Observations–2012 to 2016

It has been 4+ years since I first embraced my Electronic Health Records (via (EHR) patient portals).  In this time, I have seen long overdue digital age progress come to the healthcare industry.  With EHR patient portals, I now have the capability to communicate to some of my healthcare providers via the message centers and can get my unanswered questions from my last appointment answered without having to come in for an unnecessary office visit.  I can see upcoming/past appointments and request or cancel appointments.  My prescription drugs can be sent electronically to the pharmacy of my choice and I can arrange refills through the portals.

I would like to say that the EHR patient portals have been smoothly run but unfortunately I cannot.  I am repeatedly locked out of seeing my information on one website and do not get messages answered on another. One has a messaging center but has disabled my ability to even send a message to the healthcare business.  If I were not writing this blog, many of my frustrating (and time consuming) EHR patient portal experiences would have turned me away long ago.

In addition, the shareable Electronic Health Records that healthcare providers have placed in my EHR patient portals are far from the meaningfully useful records I had hoped for.  Because I am committed to eventually reaping the benefits of truly shareable Electronic Health Records, I have made it a point since 2012 to ask for and sign up for every EHR patient portal available to me. Today,  my immediate family and I have several online EHR patient portals each. I have also looked at many more EHRs from family and friends. Readers also send me stories about their experiences.

My hopes for shareable Electronic Health Records that deliver improved coordination of care, reduced healthcare costs, and improved patient outcomes has not materialized over the past 4+ years.  My experiences and observations below paint an ugly, behind-the-scenes effort by healthcare providers to thwart the Meaningful Use program and my access to my health records.  Healthcare providers and hospitals do not, and have never, wanted patient engagement in their businesses. Let’s look at three broad observations I have made.

  1. Patients not welcomed in an effort to define and assess EHR patient portals (except during the reporting period for incentive payment qualification).

My healthcare providers encouraged me to sign up only when they were being assessed for incentive payments.  At other times, getting signed up for their EHR patient portal was like pulling teeth.  Access to Electronic Health Records was never openly advertised at the various healthcare businesses where my family, friends, and I sought care. Not one healthcare provider extolled the benefits that patients would eventually derive from getting actively “engaged” with shareable Electronic Health Records.   A number of years ago I heard a lot of grumbling and experienced a lot of irritation over the Meaningful Use program. Most of the healthcare providers I came in contact with actively worked to keep patients out of the program.

I experienced the art of brush-off and obfuscation on many occasions. Some of the responses to my requests for Electronic Health Record access included:

  • “Does your mother have Internet access?” (professional had previously received $37,600 in incentive payments)
  • “No we don’t, but we can get you any electronic record you want.” (if we make you ask later, you probably will never follow-up; this professional had previously received $26,460 in incentive payments)
  • “Yes, we have had electronic records for years” (I then asked for access) “Oh you mean the EHR patient portal…no we will probably have that in the future” (professional had previously received $37,600 in incentive payments)
  • “No” and “No” (had previously received $37,800 in incentive payments)
  • “We’ll send you an email invitation.” (professional usually required multiple calls to finally get the invitation)

I did not come across a single healthcare provider who embraced the spirit of Meaningful Use or shareable Electronic Health Records.

2. Timeliness of records was a joke.

Over the past 4+ years, I was an average patient trying to “engage” in my healthcare. I went to my doctors and made an effort to contribute to my healthcare. I logged on to my EHR patient portals and waited for some Meaningful Use content to appear. I waited and waited. I, my family, and friends have waited for YEARS, not days, for something of Meaningful Use value to appear in our EHR patient portals. The rules of the Meaningful Use program say that we are supposed to receive Clinical Summary reports in a timely fashion (within 3 days after visit).  I went online to complain that I wasn’t getting any reports, but found nowhere to let the government know.  The government was satisfied with the veracity of healthcare provider  “self-attestation”.  In their eyes, there was no need to set up a simple online questionnaire after every healthcare visit asking patients to acknowledge receipt of various “self-attested” checklist items.  I was amazed at how widespread this lack of timeliness was.

Since the Meaningful Use Final Rule came out in October, 2015, my EHR patient portals are finally starting to see some Clinical Summary report files and I now have the capability to “share” them. My doctors are suddenly (incentive payment reporting period?) producing timely reports on my EHR patient portals–for now.  What will happen after they get the remaining incentive payments soon?  Only time will tell if the concept of timeliness goes back to YEARS and not days.

3. Releasing the shareable Electronic Health Records that truly have Meaningful Use was never in the cards.

I was a bit puzzled when my first EHR patient portal didn’t contain any Clinical Summary reports until years after my visits.  I was much more puzzled when I found that this practice was typical.  Within the past eight months, when my EHR patient portals were suddenly populated with Clinical Summary reports, I found them lacking in Meaningful Use and amazingly similar–incomplete and often sloppily inaccurate.   These Clinical Summaries told the story of uncooperative healthcare professionals simply filling in the required blanks to get government regulators off their backs.  There was little of my Protected Health Information (PHI) in designated record sets in the Clinical Summaries.  The leadership (medical doctors) in government simply did not require that healthcare providers make more of my PHI available in shareable electronic form.  To access the health records guaranteed by HIPAA, I would still have to ask for them in the offices of healthcare providers and hospitals.

my electronic health records chasm

 

The flurry of Clinical Summaries that appeared in my EHR patient portals since October 2015 (with the watered down Meaningful Use Final Rule) require a lot of time to sift through.  There are multiple files describing the same visit and mislabeled files (for auditor consumption perhaps?).   Are the design requirements for Clinical Summary reports simply poor?  Are healthcare providers simply bad at documentation?  Is the poor quality intentional obfuscation? I recently compared two reports about the same doctor/patient encounter–one a very clear physician summary file from an internal Electronic Medical Records (EMRs) and the other a truncated and muddled jumble for “sharing” in my EHR patient portal.  Obviously, at least one healthcare provider is capable of clear documentation, just not for patient consumption.

While the Clinical Summary reports all had essentially identical headings, they lacked the easy read that one template for all provides.  When the reports contained lab results (blood tests), they were not grouped (e.g., Complete Blood Count, Lipid Panel) for easy evaluation but are simply presented as a single string of values. Any images I had were scanned into PDF files (a format that does not provide sufficient image resolution for effective evaluation by other healthcare professionals). Inadequate image files for sharing is an invitation for over-testing and higher health spending.

The Bottom Line

My experience with my EHR patient portals since 2012 has been frustrating and has definitely not delivered on many Meaningful Use requirements.  While they do provide me with long overdue electronic healthcare communication capabilities (messaging and e-prescribing), capabilities does not always translate to operational.   The availability of shareable electronic health records in these portals for improved coordination of care, reduced healthcare cost, and improved patient outcome is totally inadequate.  The Clinical Summary Reports (PDF and XML files) I find on my EHR patient portals contain insufficient and incomplete information for Meaningful Use.  Any images found in the PDF or XML files are not usable by other healthcare providers for second opinion consultations and thus would have to be rerun (inviting over-testing and increased healthcare costs).

My experiences over the past 4+ years showed a program that did not deliver timeliness (my summaries appeared years and not days after visits).  In addition, I found a program where patients were actively discouraged from participating and “engaging” in healthcare.

I invite you to share your EHR patient portal experiences.  If healthcare providers are not delivering what they “self-attest” (and receive taxpayer money for), then we need to let our government know.

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