08/13/2012 09:54 am ET Updated Oct 13, 2012

What's Missing From the 'Patient-Centric' Conversation? (Hint: It's the Patient)

"Patient-centric health care" is all the rage. No, it's not a clinical diagnosis (oh no -- stay away he's got centric). It's the desire to put the patient in the middle of her medical care. Think on that for a moment -- our system has gotten so far away from the patient that we give the malady a diagnostic classification like "patient-centric" in order to treat it.

So hospitals and other institutions are putting in new technologies and strategies that are patient-centric. Technology companies are springing up to developing widgets galore that make the patient more centric. And medical schools are busy creating patient-centric curriculums.

I absolutely applaud these efforts and wholeheartedly believe we need to continue to move in this direction, but where, exactly, is the patient in this patient-centric revolution? As a semi-professional patient, I've seen many of the health care systems' inefficiencies from the other side of the stethoscope, scalpel, urinary catheter, insurance billings and some other things that I'd just as well prefer keep to myself. We have a long way to go until we get to "patient-involved," much less "patient-centric."

In 2004 I started coughing and experiencing ridiculous fatigue. At 35 I probably shouldn't have had to go to sleep at 3 p.m. every day (my three kids under 3 were putting me to bed on a daily basis). So started my health care system journey where I met plenty of lions, tigers and bears (oh my). I certainly wasn't in Kansas anymore and obstacles to achieving a truly patient-centric system presented themselves at every turn.

Here are only a few that stand in our way:

Challenge No. 1 - communication and coordination: I went to my primary care physician, who told me I had the flu and ordered eight rounds of antibiotics. Then I went to the pulmonologist who told me I had adult onset asthma and I should have an inhaler and multiple medications. Then I went to the ears, nose and throat expert who insisted I had nodules on my vocal cords and that I needed three more medications. Then I went to the dermatologist who decided I must have Lyme's disease, so she put me on more medications.

Actually it turns out I had thymic cancer, discovered via a CAT scan ordered by the most brilliant of diagnosticians eight months after my journey began. My file at that point was roughly two feet high and not a single doctor had spoken to any other doctor who had examined me -- and no one was monitoring the fact that I was on a dozen different medications. We talk about technology and new regulations as the solution, but until a human being actually decides to be accountable for the coordination of a patient's care, the patient is the only one holding the bag (no pun intended). And it is hard to see the primary care physician's office reverting back to the days of Dr. Marcus Welby (the incentives just aren't there).

We talk about technology being interoperable and systems being open to one other -- I'm not quite sure Coke is ready to share its secret formula with Pepsi. Sure, we can regulate cooperation, but forcing someone to cooperate by tying their hands behind their back doesn't really create an atmosphere for handshakes. And the patient suffers as a result.

Challenge No. 2 - cooperation: My CAT scan and other medical reports done at one institution could not be read by another institution's software program. I don't want to name names, but the system isn't exactly cooperative about you seeing doctors tied to different institutions. I totally understand it -- it's Coke vs. Pepsi and there's nothing altruistic about the business of health care (we just think it should be). It gets better. Have you ever tried to make an appointment at a hospital where your doctor has "privileges" but is not on staff? Sort of like me stuck behind the velvet rope trying to get into a hot club -- it just doesn't happen.

Challenge No. 3 - carelessness: It's tough enough for a patient to make her way through the system's inherent inefficiencies without dealing with a culture of carelessness. Thymic cancer is a rare disease impacting roughly 500 people a year -- so it's tough for me to be upset with the doctors for missing it for eight months. But my insurance company couldn't find the disease in its drop-down menu so it tried to convince me I didn't have it (and in that voice that you hear when you call 411 and the number you're looking for isn't available -- the "sorry sir, we can't find the number"). So I had to push my insurance company to recognize the disease my CAT scan clearly told me I had -- pure carelessness that put extreme pressure and stress once again on the patient.

Challenge No. 4 - culture: Technology and regulations can only go so far. Everyone in the system is going to have to adapt and cultures are going to have to change. Otherwise the technology and the regulations will be simply treating the symptoms and not the problem (sort of like being on a dozen different medications, each of which treats the side effect of the medication before it).

Two quick examples. First, electronic medical records are a great idea. Who wouldn't want all of their information in one place that the patient controls and uses to make things more efficient? But these potential efficiency gains are lost when the hospital programs make the patient intake process the centerpiece of the empathy training ground for their residents. In other words, even if they have it electronically, the training regimen of the hospital staff is to sit and ask all of the questions of the patient and his family again and again and again. If I saw one more resident come in and ask me if I was the patient, inquire as to how to spell "thymic," and to repeat my entire history I was going to scream. Patient-centric? No, this was patient-Kafkaesque. I'm not suggesting this part can change overnight. But we can do far better in our physician training than pretending that single intake interviews with no direct patient follow-up creates empathetic doctors who are thinking about the patient in the center. And it would be far more efficient.

Finally, one of the great things to come out of my cancer diagnosis was my ability to grow and fund The Foundation for Thymic Cancer. We've raised close to $1 million in seven years and now have more than 400 doctors around the world working on thymic malignancies. We've held a number of symposiums bringing these doctors together and I figured it would be great to get the doctor from Japan together with the doctor from Mexico. Surely they had never met. But in my wildest dreams I never thought the radiologist, oncologist and surgeon from the same major cancer institution had never met each other. No patient-centric system will ever work when the only person on the health care team who knows all of the players is the patient -- that isn't really what we should mean by a patient-centric system (and the patient has other things to worry about).

Long story short, I have hundreds of other examples of how far the system has to go to even approach patient centricity. The vision is right -- don't get me wrong. And I think we have the chance to get there. But there are far bigger things than simply technology and regulation that have to evolve. To achieve a patient-centric model, the patient experience has to be culturally central to the conversation and the solution. Otherwise this simply becomes an academic exercise -- where all the technology and regulation won't really help the patient nearly as much as is needed.