“Head for where the puck is headed, not where it is...” - Hugh McLeod
“I think the internet could revolutionize health care just like it has revolutionized the music industry, the travel industry, and the newspaper industry. And with all due respect to this beautiful shrine of a Newseum, those industries got run over by the clue train instead of jumping onto it.”
- e-patient Dave (Center for Information Therapy's 7th Annual
Wired Conference, June 12-13, 2008 @ the Newseum, Washington, DC)
“You say you want a revolution, well.....you ask me for a contribution, well, we all do what we can...” - The Beatles
Ain't this America...
It's 10:22 am on a sunny Saturday morning.
My baby sister and her husband stand outside greeting a new neighbor. My sister is 38 weeks pregnant with their first child, my niece. The new neighbor just got out of nursing school, recently finished her OB/GYN rotation. She wants to be an L&D nurse.
My sister's house in Blacksburg, VA, is part of a unique green development for working-class families. My sister, her husband, the new neighbors – they are the “Middle 80.”
And our current healthcare delivery system is failing to seize new opportunities to communicate with them.
They are the part of the pie American economy presidential candidates salivate over, the part of the American economy aware of outsourcing to the Pacific Rim, engaged in green behaviors if they want to be, banking online, trying to make a living in an economy taking a head dive.
The Middle 80; our new lower, hard-working, sometimes college-educated, lifestyle oriented middle class. And more than half of them think our next Commander In Chief should make HIT a top priority.
They read and write poetry, watch DVDs on friend's laptops, choose not to have a microwave, attend wine tastings at local shops on Fridays, and last night hosted a campfire-party for 50 to bon voyage church friends moving to Richmond, complete with bay-blue and white pennants and coordinated wrapped plasticware.
The Middle 80 is, far more than we give them credit for, resourceful.
My sister created “We'll Miss You” penants from green, blue and cream calico fabric after she didn't find any to her liking. When likeable solutions are not presented in the marketplace, the Middle 80 craft them from bits of knowledge gained via experience and the references of friends, family, and yes, neighbors.
I've written before about the 10-80-10 rule in healthcare, where 10 percent of consumers will be unwilling/unable to be engaged, participatory partners in care, 10 percent of consumers will be 'hyperhealth' hyperengaged, tech savvy, and all over Health 2.0 services like white on rice.
And then there's the Middle 80.When I translated the 10-80-10 rule from sales to healthcare, there wasn't much hard supporting evidence that the same percentages would hold true for consumer behavior in healthcare. Turns out, consumers are consumers.
Lately though, there's been some pretty substantial research to support it; Susannah Fox of the Pew Internet and American Life Research project reported more than 80% of the American public uses the web for healthcare related search (and Google uses that study to sell health advertising here).
And the Kaiser Permanente study hyperlinked here and above tells us 65% have gone online to get information about a medical condition. 73% think the benefits of being able to access healthcare records online outweigh privacy risks.
And that study is a year old. Think of how the world has changed in a year. Think of how the healthcare delivery system has not.
Let's look for a moment at how American healthcare is missing the boat for the Middle 80, like my sister, and what she chose to do about it.
Memorial day weekend. My sister and cousin were traveling back to Virginia from Southern Maryland.
A curve, a wobble, and the van carrying my baby sister, her baby, and my baby cousin flipped to the right side. After admittance and constant monitoring, all were released from the hospital with clean bills of health, except for one little thing; my future niece was now in breech presentation.
Her doc suggested a c-section and put it on the OR schedule for June 18th - 39 weeks.
We're bustling around the house getting ready for the day, headed to Wal-Mart to pick up groceries and cook up a freezer-full of food for the first weeks after the baby is born. My sister's alto voice is strong as she tells me the latest chapter in her personal health narrative. She is determined to convey how and why she chose to become a proactive participant in her care.
My sister: “I had never asked them why they scheduled it for 39 weeks rather than 40 weeks.”
Many more patients than we believe, even those who trust their physicians, literally, with their lives, are scared.
Scared of what may happen, yes, but also scared to ask questions of care-providers.
When she learned she was pregnant, my sister read quite a bit about natural childbirth, explored homebirthing options, accounts by midwives, doulas, etc. when she learned she was pregnant. However, she'd read almost nothing about cesarean sections.
My sister does not own a television. She does not own a microwave. She does not have a computer or internet access at home, which is why I'm sitting in Bollo's coffee shop in downtown Blacksburg, sipping a skinny mocha, typing this story.
But my baby sister – she wasn't satisfied with not knowing why her doc had scheduled the c-section for 39 weeks. She wasn't satisfied with not knowing the risks. She wasn't satisfied with feeling scared.
So what did she do about it? What just about anyone in their 20s does now. She went online.
She used the computer at work to search for information on Google using the search terms: “c-section,” “when should I have a c-section,” “external version” “how should I flip my baby.”
Based on what she read online, after asking her doc if this particular potential solution was appropriate, she went to the gym and laid upside down on the incline bench with her butt higher than her head for 10 minutes. She stopped when she got dizzy, and felt “embarrassed and discouraged.”
I asked my sister why she looked online for this information. Her response? “Fear.”
My sister: “My perception of what happens if you're not willing to educate yourself is that the doctors will make decisions for you and it'll happen. They'll just tell you that this is the way it's gonna be and that'll happen. I felt safe, don't get me wrong. I felt like I would have been taken care of and that they would have made healthy decisions for me, but maybe not my optimal decision.”
My sister's OB does 5-10 versions a year. 3-4% of babies have some kind of breech presentation. 65% of external versions are successful at around 37 weeks (Blogger's note: Revised after original posting; if I've still got this wrong please let me know in the comments). About 4% of originally successful external versions fail -the baby flips back around. Sometimes this is natural – the stubborn babies don't want to turn, some can't due to neuro-muscular defects.
Question to my sister: “Why didn't you ask your doc or schedule an appointment to talk about your fear first?”
Even though she trusts her physician absolutely to do what's best for herself and her baby, my sister said she went online due to a variety of complicated, interrelated factors including time and a desire to learn for herself what options were available, and hear what other moms thought. “I can tell he's rushed. I feel like he's always been frank with me, has not sugarcoated anything.”
For instance, early in her pregnancy, she prepared a list of questions. One of the first she asked her doc: “What do you see as the risks and benefits of natural childbirth?”
His response: "First let me tell you about my experience with pain. People experience pain differently. Some women can come in at 2cm and are writhing on the table, and some women come in at 8cms and think they're having indigestion.
I think it's really sad when I see a woman dead-set on natural childbirth and she's in pain, or the labor doesn't progress, or the baby goes into distress and she requires an epidural or a C-section (or other intervention) and “it ruins the birthing experience.” They lose the focus of the miracle that their baby is being born."
"On the other hand, women come in planning to have an epidural and it's the middle of the night and they're waiting on the anesthesiologist, or you get it and it's not effective, again, the focus is taken away from the miracle that's happening."
Me: “This was a great answer."
My sister: "More than the risk and benefits of natural childbirth, I think he was speaking more to the mindset of either, the experience.”
She's the part of the consumer healthcare experience no one thinks is happening, but it's out there happening, 80 percent of the time. At least.
I'm wondering how she and her doc have managed to fit so much conversation and cooperation in determining her optimal care plan into 2-4 minute windows. Me: “How long are these visits with your doc?”
My sister: “There have been visits that have been half an hour long, there have been 5 minute visits. It depends on whether or not I have questions. I have to be prepared to make the visit that long. They're not gonna stay in there. Why would they? They have a whole waiting room full of people.”
“When I was at the hospital and he was flipping the baby, he also had 3 ladies in labor, two dilated at 9cms and 1 pushing, and he was still responsible for taking calls at the hospital.”
Literally and figuratively, docs have their hands full. And they're not getting paid to juggle the optimization of care for every patient who wishes to participate.
Our payment and incentivization system is turning docs into mechanics, but we're not giving them the tools they need to keep us running at the levels we want. It's like an experienced, certified, knowledgeable mechanic being confronted with a next-generation hybrid car, and trying to fix the thing's engine with the only tool she's got - a sledgehammer.
The Middle 80 percent of today's medical consumers are the hybrids, and the bulky, imprecise tools we're giving our docs to operate with are the sledgehammers.
This is the other part of the 'consumer' experience in medicine we're all forgetting. Patients aren't the only consumers in the coming “consumer-centric” system. Physicians are consumers of goods and services that increase their ability to treat patients efficiently and empathically, or they would be if better options were out there.
But that's a blog post for another time; let's go back to the 'patients as consumers' thing for a bit.
Part of the problem with the current state of consumer-centric care is that we have problems accepting that simplifying offerings for patients doesn't necessarily mean creating products for the “lowest common denominator” as one Center for Information Therapy's Wired attendee put it yesterday morning during a roundtable discussion.
In one sense, it doesn't matter that the average health literacy level is the equivalent of a 5th grade reading level. Though the average reading level in the US as whole hovers around a shameful 8th grade level, this hasn't stopped our economy from moving past the industrial age, to the service age, and finally to a knowledge and innovation economy, driven by supply and demand market forces. US healthcare, however, is still stuck in the 'industrial age' model of care delivery.
The “industrial age” approach to healthcare assumes that the same model will work for everyone in the Middle 80. And you know what they say about assuming.
This completely misses microsegmentation which has swept the global consumer economy. If we aimed for the “lowest common denominator,” we'd aim all offerings at the lower 10 percent, and miss the Middle 80 entirely, both here and abroad.
But in many ways, we already are missing them.
EMR and PHR platforms marketed today are consumer-centric, proprietary, closed-end systems that are bulky, clumsy, and slow-moving. Several tech and web players have semi-decent models, but their organizations lack the coherence needed to make confluent applications palatable to the Middle 80.
When this coherence factor arrives, it will herald the arrival of 'nexthealth' (remember from this post that nexthealth = content + community + commerce + coherence, when healthcare consumers, all of them, can 'dip' online and offline for access to healthcare/wellness goods and services).
An application (or 20) that meet the Middle 80 where we live, play, work, love has yet to arrive, but it's on its way. It'll be here sooner than you think.
Someday soon this post will seem unusually prescient. It's not.
All it predicts is that some few healthcare and HIT entrepreneurs are aiming where the puck is going, and this approach will bear fruit. They will succeed in changing how patients and physicians, two underrated, underrepresented healthcare consumer segments, view healthcare planning and delivery, as both an art and a business.
The Middle 80 is out there, actively searching for 'what's next.' The question is, are you building some part of it for them, or will you watch, bewildered, as the evolution of consumer-centric care passes you by?