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 This email address is being protected from spambots. You need JavaScript enabled to view it..

Maria DeGiglio is president and principal analyst of Maria A. DeGiglio & Associates. Current clients of Maria A. DeGiglio & Associates include the Visiting Nurse Service of New York ; Experture, LLC; and MC Press. Ms. DeGiglio has more than 20 years of experience as an IT consultant, industry analyst, and executive. From 1997 to 2005, she worked for Andrews Consulting Group and the Robert Frances Group.

 

Ms. DeGiglio received her Masters Degree in Health Advocacy from Sarah Lawrence College and graduated Cum Laude from Cornell University with a Bachelor of Arts Degree.

 

 

Ms. DeGiglio has worked with IT and C-level executives to enable IT alignment with business goals and to implement best practices. She has experience and expertise in both large enterprises and in small- and medium-sized business. Ms. DeGiglio has authored over one hundred articles, reports, and white papers.

 

 

Since 2004, she has worked in the healthcare industry and in health IT investigating the legal, ethical, and regulatory aspects of creating, implementing, and exchanging electronic health records (EHRs). Ms. DeGiglio is an expert in security, privacy, and HIPAA regulatory compliance.

 

 

Ms. DeGiglio may be contacted at This email address is being protected from spambots. You need JavaScript enabled to view it..

 

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