When our son was diagnosed with food allergies, we were absorbed into a new way of life, learning the folkways of keeping him safe. We labeled every jar and can in our pantry and fridge so that anyone who visited could see at a glance what was safe (green) or unsafe (red). Like Curtis Sittenfeld, who wrote about learning to live with a child’s allergies in The New York Times, we came “to know certain products so well that when they get a new ingredient, it’s like a friend getting a haircut.” Continue reading
This type of iris, named for my grandmother, blooms in both the spring and the fall. When they do, I greet them by name and think about her indomitable spirit.
From nearly the beginning of writing this blog I’ve had a category tagged beauty and wonder. I was re-reading a few of those posts this morning, since we are all, once again, being urged to look for the helpers, as Mister Rogers said. If you haven’t yet read it, Maura Judkis, the daughter of the photographer who captured the now-famous image, wrote a lovely essay about the boy in the picture.
Here’s what else I’ve been reading, listening to, and admiring…
Just Mercy, by Bryan Stevenson
The Lucky Red Tie – Micah Truran on The Moth
The Boys in the Boat, by Daniel James Brown
The Can-Do Playground in Wilmington, DE
How virtual reality can create the ultimate empathy machine, by Chris Milk
And I’m re-reading:
The 95 Theses of the Cluetrain Manifesto (because they are as fresh and relevant today as they were in 1999)
Suck.com: a fish, a barrel, and a smoking gun (because it’s also good to remember how far we’ve come)
“…The third little pig met a man with a load of bricks, and said:
‘Please, man, give me those bricks to build a house with.’
So the man gave him the bricks, and he built his house with them. So the wolf came, as he did to the other little pigs, and said:
‘Little pig, little pig, let me come in.’
‘No, no, by the hair of my chiny chin chin.’
‘Then I’ll huff, and I’ll puff, and I’ll blow your house in.’
Well, he huffed, and he puffed, and he huffed and he puffed, and he puffed and huffed; but he could not get the house down.” — English fairy tale
* * *
“History is written by the winners.” — George Orwell (1944 column)
I recently took a trip to London and Edinburgh where, thanks to my husband and younger son, we spent a good deal of time at places like the Churchill War Rooms and the Tower of London. Our older son chose the Tate Modern for one of our afternoons and, when I had the chance to influence our day, we took in a 360 Allstars show.
You can’t help but admire how the British have preserved their history. While we were there, The Independent ran a front page story about a murder that took place in 1483. My eye was drawn to this line:
Some British families with private archives dating to the Plantagenet and Tudor periods are also coming forward to open their doors to Ms Langley and her research team.
Imagine! In the U.S., genealogists are pleased if they can trace their lineage back to the 1700s, gaining them admission to societies like the Daughters of the American Revolution. Personally, I think boasting about one’s lineage is unseemly — even un-American. Just because your ancestors left written records or could afford gravestones does not mean they are any more worthy of honor than those who did not. Paper and stone persist, that’s all.
All families, all nations, all cultures have history that goes back thousands of years. But only those who built with stone and stayed in the same spot have the proof. Those who packed up and moved, by choice or by force, and those who built with wood are less likely to leave a permanent mark on the landscape like this chapel we walked to in Edinburgh:
What health institutions persist because they are built with stone (or its equivalent)? Who is writing the history of health care that will persist? Who is moving, by choice or by force, and forging new paths?
Tom Ferguson, MD, gave me this robot in 2002, part of the
first (and only?) fourth class of awardees of the Ferguson Report Distinguished Achievement Awards. I have kept it on or near my desk ever since.
Reading Tom’s old essays, even as far back as the 1970s, is humbling. He foresaw so much of the world we live in now. I owe him a great debt since part of his vision was to see something in me that I didn’t yet see in myself. He believed in me.
Here is the introduction to the e-patient “white paper” (PDF) he was writing at the time of his death in 2006, which explains his attachment to robots:
I collect old toy robots. My Atomic Robot Man robot (Japan, 1948), shown [at right], is a personal favorite. For many years I didn’t understand the powerful hold these dented little metal men maintained on my imagination. One day I finally got it: They show us how the culture of the 40s and 50s imagined the future. Cast-metal humanoid automatons would do the work previously supplied by human labor.
That wasn’t how things turned out, of course. By making more powerful and productive forms of work possible, our changing technologies made older forms of work unnecessary. So instead of millions of humanoid robots laboring in our factories, we have millions of information workers sitting at computers. We didn’t just automate our earlier forms of work. It was the underlying nature of work itself that changed.
In much the same way, we’ve been projecting the implicit assumptions of our familiar 20th Century medical model onto our unknown healthcare future, assuming that the healthcare of 2030, 2040, and 2050 will be much the same as that of 1960, 1970, and 1980. But bringing healthcare into the new century will not be merely a matter of automating or upgrading our existing clinical processes. We can’t just automate earlier forms of medical practice. The underlying nature of healthcare itself must change.
This is not some technoromantic vision of an impossibly idealist future. It is already happening. The changes are all around us. As we will see, the roles of physicians and patients are already changing. And our sophisticated new medical technologies are making much of what the physicians of the 1950s, 1960s, and 1970s thought of as practicing medicine unnecessary. Financial constraints are making the old-fashioned physician’s role unsustainable. And millions of knowledge workers are emerging as unexpected healthcare heroes.
When they, or a loved one, become ill, they turn into e-patients—citizens with health concerns who use the Internet as a health resource, studying up on their own diseases (and those of friends and family members), finding better treatment centers and insisting on better care, providing other patients with invaluable medical assistance and support, and increasingly serving as important collaborators and advisors for their clinicians.
We understand that this document may raise more questions then it answers. And while we are by no means ready to dot all the Is or cross all the Ts, we strongly suspect that the principal protagonist of our next-generation healthcare system will not be a computerized doctor, but a well-wired patient. Yet our formal healthcare system has done little to recognize their accomplishments, to take advantage of the new abilities, or to adapt itself to their changing needs.
Turning our attention to this promising and fertile area—which to date has somehow remained off the radar screens of most health policymakers, medical professionals, federal and state health officials, and other healthcare stakeholders—may be the most important step we can take toward the widely-shared goal of developing a sustainable healthcare system that meets the needs of all our citizens. But as the battered little robot beside my computer constantly reminds me, we are in the early stages of this process. And our current and future new technologies may change the nature of healthcare in ways we can, as yet, only vaguely imagine.
As MIT’s Sherry Turkle has suggested, instead of asking how these new technologies can help us make the familiar processes of medical care more efficient and effective, we should ask ourselves how these new technologies are “…changing the ways we deal with one another, raise our children, and think about ourselves? How are they changing our fundamental notions of who we are and what we need to do and who we should do it for? What new doors are they opening for us?”
The key question we must ask, Turkle suggests, “…is not what technology will be like in the future, but rather, what will we be like…” when we have learned to live and work appropriately within the new technocultural environments even now being created by our new technologies. For the healthcare of the future—if it is to survive—will be as novel and unexpected to those of us trained as clinicians in 20th Century medicine as today’s computer-toting knowledge workers would have been to the social planners of the 1940s and 50s. We hope that the chapters that follow provide our readers with some interesting and useful perspectives on these questions.
If you have not yet read the full paper, I highly recommend it.
I would love to hear reactions to Tom’s essay. And I’d love to hear what you keep nearby, to inspire you. Please share in the comments.
I snapped this at the start of a long walk in Sky Meadows State Park last weekend — a highly recommended trail, even on a hot day, since it winds up a mountainside and through woods that somehow stay cool.
In the spirit of blue-sky, purposeful day-dreaming on a summer Sunday:
I’m reading… “How Do You Do it?” by Raney Aronson.
I’m listening to… Kate Braestrup on The Moth Radio Hour.
I’m watching… Bill T. Jones at TED 2015.
How about you? What are you reading, listening to, watching today?
I hung a quilt in my office yesterday. It was not sewn by any of my ancestors, but a great-great-aunt did have the good taste (and fortune) to buy it. Here’s a detail:
The White House Conference on Aging only happens once every ten years — and it’s happening tomorrow.
The program begins at 10 a.m. ET on Monday, July 13, and will be livestreamed: https://www.whitehouse.gov/live
I’ll be on a panel in the late afternoon talking about technology and the future of aging, directly after Tim Brown and Barbara Beskind discuss universal design. (Read this Wall Street Journal article about some of Beskind’s ideas.) Continue reading
Nine Precision Medicine “Champions of Change” were honored at a White House event on Wednesday, July 8. I count everyone in that picture as a community colleague — and some as dear friends.
In my introduction to the panel, I talked about how this was a panel about data liberation. These four Champions demonstrate how essential it is for individuals to have access to their data, to lift the false boundary between home and clinical care, and to allow patient autonomy to flourish. Continue reading
One year ago this week I was in Sweden to deliver a talk at Almedalen, a festival of ideas held on the island of Gotland.
This year, my community colleague John Nosta brought the latest in American ingenuity to the same event, telling the crowd that digital health is not a far-off promise, but instead simply requires the implementation of technology that exists today.
I’ll update this post when The video of his talk is up and you can check out his tweets.
Two essays I wrote about my own trip:
The comments alone are worth a click — fascinating conversations about interoperability of health IT systems, collectivism, equity, and value networks. The conversation is never over, so please post new questions and comments if you see something that inspires you!
Technology enables the mission of U.S. Department of Health & Human Services (HHS). It widens access to information and tools and pushes power out to all parts of the network, from our colleagues in the federal workforce to our fellow citizens. At HHS, we seek to create a learning system that recognizes the potential of every stakeholder in the network to contribute, from patients and caregivers to clinicians, researchers and policymakers.
The CTO of HHS serves the Secretary and the agency by bringing new approaches to the problems faced by those on the front lines of medicine, public health, and social services.
I see the role as a spotlight and a beacon, highlighting the innovative work being done inside and outside the federal government and inspiring people to reach higher, in service to citizens. Continue reading