In a world where, in a moment, I can order from thousands of items and have them delivered to my doorstep the same or next day at the press of a button without having to re-enter my name, address, and billing information each time, it would seem that filling out paper forms at the doctor’s office by hand to have someone else re-enter the information into a computer that doesn’t communicate with other computers in the same clinic system is craziness. And if someone doesn’t do it right, it can follow you everywhere forever — and you may never know.

After some recent personal medical visits, I can’t imagine what it is like for cancer patients and families dealing with serious illness trying to navigate the complex system we call health care. It’s time we get the technology working for the patients, not making their lives even more difficult.

In each of my encounters, the setting was fairly typical for a large health system in a large metropolitan city. I needed to get care regarding two straightforward problems with two different clinics in the same system a couple of weeks apart. So far, so good: the care was excellent, the support staff friendly and competent, and the physicians attentive. But it was the technology — or lack thereof — for a fairly simple process that boggled my mind.

Now, I have more than a passing interest in health information technology (HIT). I have been an observer and participant in many discussions about HIT over the decades. However, when facing it up close and personal, I am always surprised that reality has such a difficult time living up to the promise and capabilities.

So here I am, seeing specialists at what we will call a Major Medical Center (MMC) a couple of weeks ago. I walk into the office, and of course am handed a form asking for all my personal information, medical history, and billing information. I fill it out by hand — with my lousy doctor handwriting — no doubt, forgetting some important dates and facts regarding my medical history. The very kind receptionist takes the form, and I realize that someone will have to re-enter all of that information manually into MMC’s computer system.

Like everyone else who’s gone through this, I thought: What a waste of time! Why couldn’t I have completed this online before I showed up and before I was under time pressure to remember all sorts of actually very important facts about my medical history???

The visit went well. Now a couple of weeks later, I am back at the MMC to see another highly qualified (and pleasant) specialist in another department. This time I was told in advance to download the personal medical history form and bring the completed form to the office. I go to the website the night before and guess what? An electronic form that can be completed online? Wrong! A paper PDF that has to be downloaded, printed, and completed by hand in the same lousy doctor script.

The next day I ask the (once again, very pleasant) technician who handled my intake pre-examination what happens to the new form I just completed. One would think that the information from my previous encounter would be in the same computer system. No such luck. She informs me that she will have to take the information I provided and enter it manually. Oh, and the computer system for this particular department is entirely separate from the other department’s computer system. They don’t communicate with each other. Let me repeat that: same MMC, same building, entirely separate computer systems.

From my perspective, that is a waste of everyone’s time. At least I have access to a patient portal where I can correct the data. You see, in addition to all of this stuff is the fact that medical history information that was transferred from my prior source of care in a different city had errors regarding previous dates and medical services provided to me, and those errors need to be corrected — not to mention whatever other problems may have occurred when the information I just filled out isn’t entered correctly. If one doesn’t correct the errors, they will follow you around forever. Computers never forget, do they?

As if this wasn’t enough, I also had to contact my primary care office to get a copy of some lab results. That should be easy, especially since the office has an electronic medical record. But that office recently installed a new computer system — and, yup, they don’t communicate, and the data wasn’t transferred from the old system to the new system. There was no way to get the information from the old system to the new system and sent to me electronically.

So these are not major issues. I realize that. But if the upfront, patient-facing stuff doesn’t work, do you think I have much confidence in what else is going on in these systems?

I know health care is a complicated business, but so are marketplaces, airlines, banks, and many other mega-businesses that we deal with online every day. If a coffee chain can let me create a profile with my favorite drink and my payment information, allowing me to order ahead and pick it up without even waiting in line, shouldn’t there be some way for our medical system to allow us to enter and retain the most basic of information, so we don’t have to fill out form, after form, after form with every appointment, not to mention keeping a record of our test results and other health information?

We shouldn’t have to hold our breath when it comes to our health and hope that something is done accurately and efficiently.

Maybe it is time that we, as cancer patients, caregivers, families, and many others, stand up and demand better attention to our personal needs when it comes to our interactions with health systems. Some of these systems understand how to do it, while many others do not.

When you have a disease where treatment is as complex (and expensive) as cancer, the least you should expect is efficiency where efficiency counts. You need to be able to pay attention to taking care of yourself and your loved ones, and not have to worry whether some computer makes your life more complicated than it has to be. It just shouldn’t be that way, should it?

J. Leonard Lichtenfeld is deputy chief medical officer, American Cancer Society. He blogs at Dr. Len’s Cancer Blog.

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