“Your Primary [doctor] is like your mother. You don’t change your mother”

These were the words of our server this morning over a breakfast with Neil Calman, MD, who is in Washington, DC, to talk to our national legislators and researchers about health information technology.

How did this come up in conversation? Well, as our order was being taken, I noticed a brochure for her health insurance plan in her uniform. That visual alone said so much about how much health care means to us.

So I asked what she thought of her health care.

She told us that she was a breast cancer survivor for several years now, and that she had excellent cancer care. (She told us, “your patients have probably told you this – a part of you dies when you learn that you have cancer.”) After her treatment was completed, she was referred to her primary medical center to continue care. She said that whenever she goes to get care, though, her primary doctor is not available. She hasn’t seen her in awhile, and she told us it’s not the same. “Your mother knows everything about you.”

I asked if she had Internet access and if she used this to communicate with her care system. Yes, she said, but her primary doctor did not respond to her messages in a timely manner. “I know she’s very busy just like me.” She told us that she’s given this feedback directly to her plan. At the same time, she told us with some pride where she got her cancer care, and where she now gets her primary care. She also told us about several of her work colleagues who have been diagnosed with cancer. They are all aware of each others’ conditions.

As you can probably guess, this was not a short conversation, and it had a lot of impact immediately for Neil and myself, who are both primary care physicians. We just listened to a fellow patient teach us about her care experience, from a very personal place.

Neil helped me think about what the importance of this conversation is. It’s not about the health plan’s service. It’s about primary care, and our creation of expectations, and a “model” that people identify with and want to use. Unfortunately, as Neil stated, we’ve locked the door. They can’t get in. In a bit of self-reflection, Neil referred to the fact that he’s in Washington, DC, and his panel of patients is in New York City. Doctors want to be there for their patients.

I could say that patient-centered health information technology can help here, because a timely response from one’s own physician, online or in person, is very meaningful. It says, “I know about you.” At the same time, patient-centered health care information technology requires patient-centered health care. HIT will not make a system patient-centered. We know that.

Today, though, a complete stranger was kind enough to teach it to us again.

As we do this project experientially and people ask, “Ted, what are you observing for?” This is it.


Dear Ted:

Thank you for sharing this wonderful story. The patient's voice and perspective are critical to learn about how to redesign health care. As we move forward with technology, we will all have to work together – providers, patients, and their families, IT experts, payers, etc. to keep the information technology truly patient-centered. Keep up the great work!

Marie, Thanks for your comment and your encouragement as we continue to visit other practices – it makes a difference to know that others think this is important. Appreciate any feedback or suggested adjustments as well. – Ted

Ted Eytan, MD