With all the brilliant and useful technology we have amassed over the last decade, patients must still play the infuriating waiting game for medical test results and diagnoses.
I am going to cut right to the chase. Three years ago, I was
diagnosed with a serious illness. It was treated, and I am now thankfully in
remission. However, several times a year, I am beset with extraordinary anxiety
and stress, which affects every aspect of my life because I have to wait, and
wait, and wait—for days on end—for MRI and phlebotomy
results.
Recent studies show that about 20–25 percent of physicians
have implemented or are implementing electronic health records (EHRs). The
Department of Health and Human Services (HHS) has mandated that all Americans
will have a portable EHR by 2014. And companies such as Accenture, Northrop Grumman IT, Computer Sciences Corp., and IBM Corp. were the Big Four selected to develop
solutions for the Nationwide Health Information Network (NHIN), which is being
designed to consolidate our medical records and make them available on demand.
Ah, but there's the rub. To whom will those records be made available?
Obviously, to physicians. But what about to patients?
The HHS mandate is
for portable records, which means the patients will be responsible
for protecting, carrying, accessing, and presenting their medical records. But
how the hell can we do this if we cannot wrestle our medical information away
from physicians to its rightful owners—us? Many physicians make us wait
docilely, if anxiously, for our test results like faithful dogs for their
treats. What is even more maddening is that under the Health Insurance
Portability and Accountability Act (HIPAA), which was enacted by the U.S.
Congress in 1996, we as patients have a right to view our medical records. The
problem is that many providers deny, and many patients don't exercise, that
right.
I am an aggressive self-advocating patient, which means I call and
call and call ad infinitum—and ad nauseam for the staff. When checking on
my MRI results the other day, I was told that since the MRI was performed on a
Friday, the radiologists wouldn't read the films until Monday. Well, isn't that
interesting? The tech at the MRI center told me Friday that the radiologists
were on duty on Saturday and would be reading the films. Then I was told that
the hospital would not be faxing the report to the surgeon's office because the
hospital systems were down. (I am assuming it was the PBX.) Down! How the
hell can a hospital's systems be down? In private industry, that is called a
"crit sit"—red alert and all hands on deck until the problem is resolved.
I tried to call the hospital—about a million times—and discovered
the phone lines to virtually all the departments were busy—interminably.
How can an organization such as a hospital function in this manner? What about
relatives and friends calling to speak to or ascertain information about loved
ones, or physicians calling ahead because they are admitting a patient, or
hospital administrators trying to obtain authorization from insurance companies
for a patient to undergo a procedure? This is unconscionable. Back in
the day, physicians held onto to our medical records and adjuvant information
like the Gollum held onto the one precious ring in the J. R. R. Tolkien
legendarium. Patients' medical information and records resided entirely in the
possession of the physicians, and the physicians could choose to share or not
and could interpret findings for the patients, but they rarely let the patients
see their own medical records—their medical currency—thereby
ensuring that the physicians retained sovereign power, leaving the patients more
or less disenfranchised. Imagine your financial institution not allowing you to
see your financial records or your account balances and
transactions—because maybe you are not smart enough to interpret them.
Sheesh!
In an era of instantaneous gratification in which we can IM and
be IMed to distraction, email and text message our brains out, surf the Web
whenever, wherever, and for as long as we please as well as securely pay all our
bills online, we can't get lab or other medical test results quickly over the
Internet—either by email or through a patient portal—as soon as they
are available.
Now, I understand that finding that you are overdrawn at
the bank is technically not as disturbing and potentially as alarming (although
some would dispute this) as discovering that there is an anomaly with an MRI or
with phlebotomy results. However, if the test results are OK, why can't the
physician either electronically sign off and send an email stating such and then
call the patient—promptly—when test results indicate a need for a
visit? Why all the cloak and dagger and smoke and mirrors?
There is a
method behind this madness. It is inefficient and ineffective, but it is part of
the medical paradigm, albeit one that is beginning to be repudiated, in which
the physician is all powerful and the patient is subject to the whims of said
physician. This is changing, and the old regime may soon be toppled, especially
if HHS achieves its rather lofty goal of a portable EHR for each individual
American. If we, the patients, are going to be responsible for our medical
records, then we must have the inalienable right—to be strictly
enforced—to see them without having to play dodge ball with the
physician/gatekeeper.
But are we prepared as a nation to do this? The
technology is certainly there, as is the security, but the socio-cultural
paradigm has not yet shifted. Some medical providers have followed the lead of
financial institutions, which use SiteKey security and other state-of-the art
encryption. But for the most part, in the medical realm, we are still living in
a primordial soup in which providers do not know how (or cannot afford) to
efficiently use technology to ascertain the identity of patients and provide
them access to their medical records and test results—or maybe those
providers are afraid of litigation. To truly enable and empower patients to take
ownership of their medical records will require more than just rote
implementation of technology; it will require a paradigm shift (paradigms are
always shifting, aren't they?), which will change the physician-patient
relationship and force physicians to recognize that most patients, except for
the cognitively or otherwise impaired, are capable of managing (or mismanaging
as the case may be) their medical currency just as they do their finances and
that it is not up to an organization such as the AMA or the government to
restrict that access and ownership.
Maria A.
DeGiglio is President of, and Principal Analyst for, Maria A. DeGiglio &
Associates, an advisory firm that provides clients with accurate and actionable
information on business and technology initiatives. You can reach Ms. DeGiglio
at
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