"Differences" & Inviduality in Healthcare Delivery

Life is glorious. I am an aunt.

Yesterday my sister labored 20+ hours to bring Ellen Noel into the air-breathing sector at 4:39AM, assisted by her physician and 'salad tongs' (forceps) - quite the experience.

Hearing Kate's pleasure at forgoing a C-section because she had a physician who collaborated rather than controlled, a new aunt can't help but see what's going right and what's going wrong in healthcare.

This is how it's supposed to work - healthcare as a conversation - a doctor who listens to your concerns.

Who puts your health first, your wishes second.

Always. In that order. Health nipping at the heels of desire.

Ted Eytan tweeted this morning that he's switched to Kaiser Permanente. Verbatim: "it's official. I'm now a member (patient) of Kaiser Permanente. I will only receive care from organizations that are member centered."

Perhaps one day Ellen will break an arm. Or have an acute attack of appendicitis. Or worse.

Whatever the diagnosis, our mission, should we choose to accept it - to ensure she'll enter a care setting where the physician gives her more than 2 minutes and a bottle of pills.

Where she's an individual not a case study.

Where her individual health narrative is respected, recorded, and notable for her differences (per Doc Searls live from the hospital) rather than simply her 'sameness' to others with similar diagnoses.

Other industries get this - there's room for difference in both the practitioner approach and treatment of the consumer.

Do all airline pilots fly the same? Nope. They have a set pattern, certainly a route. But style surely counts for something.

Style, individuality, 'difference' is the determinant that separates a bumpy landing from a smooth one.

It's the same in physician-patient relationships, and subjective valuations of hospital care experiences.

Style, service design, surely count for something.

Which is why hospitals find allowing "mystery" patients to subjectively rate care such a slippery slope.

But here's a really scary thought...maybe a doc's style, or 'in person' visit skills, won't matter much to baby Ellen after all.

Perhaps by the time Ellen is wrapping the world around her expressive little fingers she'll interact first with a physician online, or through a mobile device. Perhaps if she develops diabetes she'll test her blood levels without sticking herself with needles several times a day.

I can't map out Ellen's healthline for her. And I can't predict what amazing HIT developments will evolve as she grows.

All I can do is work behind the scenes to make sure the system she encounters is as open-source as possible, allowing her to be a 'free range' human. She should be able to access care when and where she wants to or needs to, online or offline.

Birth is a miraculous thing in any form (or species), but when it's family, well, my only job is to stand and try not to fall over under the weight of responsibility that comes with a new life. This little girl will be raised by a village.

The only way initiatives to involve patients in the care planning and delivery process will work is if we operate as a global village.

As a result, advocacy work e-patients are doing has never seemed so vital, so immediate.

That means propping each other up when we're down, hit below the belt by illness and injury, or lost in the maze of the medical system (@Dutchcowboy, Doc Searls, @icmcc).

I held my little niece for almost 40 minutes this morning. We sang Blackbird (ok, I sang, she snored and gurgled and grunted a bit - a fitting accompaniment).

Then we talked about light things like world peace and what we should eat for breakfast (me - eggs and koffie. her - colostrum).

Ellen has no earthly idea she's my muse. But her arrival is refreshing the way I view our healthcare system and its potential - and mine (perfect timing, little girl).

I'm rocking her sleeping form thinking hard. What is my work here? How do I change healthcare? How do I help figure out "what's next?"

Poet Mary Oliver says it best in the poem "Messenger," from "Thirst (2006):"

My work is loving the world...

Am I no longer young, and still half perfect? Let me
Keep my mind on what matters,
which is my work,
which is mostly standing still and learning to be
astonished.


Perhaps I'm living in an ideal world.

After all, what serious adult person lists "learning to be astonished" as an occupational goal?

But that is what the US healthcare system needs, now more than ever. People willing to wonder, to ask "why." People willing to wonder how things could improve. And people willing to design systems that may improve care and move us to "what's next."

You have to regain a sense of wonderment, astonishment to ask "why" repeatedly.

In my ideal world, I'm a person rather than a "template." In my ideal world, my experience as a person who is also a patient is at the top of the health narrative foodchain, rather than the bottom.

Then again, those who learn to be astonished often astonish others.

Stick around for awhile Ellen. We're going to need plenty of muses. We were only waiting for this moment to arise.