Portal Hypertension

March 20th, 2013 by DCPatient Leave a reply »

I have to admit, I was like Ralphie in the movie A Christmas Story, when he finally received his Little Orphan Annie decoder ring in the mail after a long wait and much anticipation, only to find out that the secret message was to “Drink your Ovaltine”.

Such was my let down when after finding out, only through passing comments by one of the physicians I am friends with at the hospital where I receive most of my care, that there was indeed a patient portal at the institution [Comment 1: if you have a patient portal please tell patients about it] and finally receiving a PIN number to gain entry, and working with the helpline to find out that I must enter my name in ALL CAPS because that is how it is in my patient record at the hospital [Comment 2: random case sensitivity not mentioned in the instructions, unnecessary barrier to use] I  accessed my patient portal to find – NOTHING!

Ok, almost nothing.  After being a patient at this institution for 6 years, seeing primary care, GI, transplant, having multiple labs, procedures, imaging, and being an inpatient there was the following information available to me:

  • Four (4!) values under general health – 1 blood pressure reading from December 2012 and 3 lipid values from June 2008
  • My medications list
  • My immunizations

That’s it!  Hello, where’s my data?  [Comment 3: The whole point of a patient portal is to have access to all the information about me (including the notes, see OpenNotes project ) in the EMR of the hospital and associated practices.] That not just my hope or opinion. When I finally got my hands on a marketing brochure for the portal they describe themselves as, “your direct link, via your personal computer, to the electronic health record your doctor creates and maintains for you.” It further states that, “Your entire paper patient record file is now stored digitally in a safe, secure environment.” If my doctors only have 4 values, a list of medications, and immunization records upon which to make clinical decisions about me then I am in big trouble.

As for other features – request an appointment and request a referral are really just secure emails that the fine print mentions may take 2-3 days to be returned.  I might as well just call. Actual appointment scheduling, alerts to upcoming appointments and allowing me to fill out the forms in advance of the appointment would be worth my time and very helpful to both patient and provider efficiency.  The renew prescription feature is limited, certainly nothing to make me give up the auto-refill and auto-renew offerings from CVS/Caremark’s website.

The final indignity is the request test results feature – JUST SEND THEM!  Why should I have to specifically recall and request each lab, procedure, and test result?  Also, I couldn’t even if I wanted to because only one of my doctors is listed.  Indeed, Meaningful Use objectives include providing patients with timely electronic access to health information within 4 business days of that information being available to the provider. Start with uploading the clinical summaries if that’s all you can handle right now, but 4 values over 6 years of data is inexcusable.

The Frequently Asked Questions section (my real questions are truly just WTF and why did you bother?) explains that this portal is not intended to be a PHR. The option is given to upload this information into my Microsoft HealthVault account.  Not much use if there is nothing to upload.

The FAQs also say, “no”, literally, to being able to view, share, or help manage your family members’ records. [Comment 4: Access by parents, children of seniors, or other caregivers is one of the top reasons that people would derive value in using a patient portal]  The marketing materials, however, state that, “you may choose to share your lab results and other information with a family member you want to help manage your care.” You just can’t do it here.  Well you can if you give your caregiver your ID and password, but they don’t mention that.

The rest of the site is health education and risk assessment tools and information on the various hospitals in the system. [Comment 5:  Risk assessment tools are more useful if you populate the risk factors from my record and I would be more willing to look through your propaganda if you had met my needs first].

In sum, I have seldom in my life experienced such great disappointment. This portal is more like Sarah Palin’s Bridge to Nowhere.  I know the technology, the policies, and the incentives exist to create and operate a useful patient portal. My institution just chose not to.  This says to me that activating, engaging, or empowering me is not important to them.  Fortunately, I am activated, engaged, and empowered enough to go elsewhere.

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  1. Oh my goodness, Donna! This is crazy-making. Perhaps your hospital didn’t broadcast news of their patient portal because of pure unadulterated embarrassment over how lame it is?!
    Carolyn Thomas´s last blog post ..Happy springtime!

  2. DCpatient says:

    It is definitely not ready for prime time and should have been introduced that way. There is also no indication that his is a beta, a pilot, that there are planned phases for adding functionality of types of data, or that they are working with patients to provide guidance to improve.

  3. DCpatient says:

    In a satisfying corollary, after meeting a new specialist at the same institution and discussing my frustrations with the portal, I receive a note and a pdf of all the labwork associated with the visit 3 days after my appointment. I was travelling all weekend and so read them when I was prepared this morning and could look anything up that I did not understand. No 4 messages from nurses, no scrambling for a pen to write lab values down on a random piece of paper, no ok now what does the doctor want me to do with that.
    So reduced workload for provider system, satisfied informed patient. Was that really so hard????