EVENT: Nurses in the Smithsonian spotlight on March 16

Exterior of the National Museum of American History in Washington, DC, with the Washington Monument in the background

Smithsonian National Museum of American History in Washington, DC

The people best suited to solve a problem are often those experiencing it.

Experimentation — and documentation — should be part of everyone’s toolbox, no matter where you sit in an organization or hierarchy.

Prototypes should be shared, not hidden away. Early feedback is golden.

Everyone is a potential innovator.

I’m excited to explore these themes and more with Tiffany Kelley, founder of Nightingale Apps, and Anna Young, co-founder and CEO of MakerHealth at an event on Thursday, March 16, in Washington, DC. The Smithsonian Lemelson Center for the Study of Invention and Innovation will host us at the National Museum of American History as part of their ongoing Innovative Lives series: “A Dialogue on Healthcare Innovation.”

We will tap into Tiffany and Anna’s unique experiences to talk about how nurses are engines for innovation in both hardware and software. They both have stories to tell about nurses who overcame barriers to drive improvements in care delivery and they will share their tips for inventors who face similar challenges in other industries.

To learn more, check out Anna’s TEDMED talk or read an article she co-wrote: “A History of Nurse Making and Stealth Innovation“:

Here is a short introduction to Nightingale Apps, Tiffany’s company:

Tiffany has also written a book, Electronic Records for Quality Nursing and Health Care, which lays out the particular challenges and opportunities for data and its role in clinical decision-making.

I hope this event will be a convening for the local health maker/hacker/informatics community, so please spread the word and register to join us on March 16.

“His doctors were stumped. Then he took over.”

How might we empower people to participate in research about their own diseases or conditions?

Which models work best for organizations solving medical mysteries or improving care for those living with rare conditions?

These are two of the questions raised by a New York Times story today: “His doctors were stumped. Then he took over,” by Katie Thomas about David Fajgenbaum, MD, and his quest to solve the mystery of Castleman disease.

New York Times Sunday Business story on Feb. 5, 2017: Doctor, Cure Thyself

Here is the section that jumped out at me:

In medical research, discoveries come slowly and take twists and turns that no one saw coming. Seasoned researchers have learned to rein in their optimism and to know that true breakthroughs can take years, if not decades, to realize. Not Dr. Fajgenbaum.

“I almost wish that every disease had a David to be a part of the charge,” said Dr. Mary Jo Lechowicz, a professor at the Emory University School of Medicine, who has studied Castleman disease and serves on the network’s advisory board.

Dr. Fajgenbaum’s single-minded mission to take on his own disease is also typical of the rare-disease world, said Max Bronstein, the chief advocacy and science policy officer at the EveryLife Foundation for Rare Diseases in Novato, Calif.

“A lot of mom-and-pop patient organizations emerge to take on these huge challenges in rare diseases,” he said. “I don’t think there’s one correct model for each disease; there’s been so many different approaches.”

Who does David remind you of? That’s the first question that I’d love to see discussed in the comments below. The people who sprang to my mind:

Again, let’s discuss: How might we empower more people to become active, expert participants in research about their (or a loved one’s) disease or condition? What are the factors that lead to someone’s empowerment?

The extra advantage that David has, as pointed out in the story, is his MD and affiliation with Penn. An interesting study might be to show the differences between organizations with medical professionals leading it vs. those with the “honorary PhD” that rare disease patients and caregivers often earn.

Another aspect I’d love to hear more perspectives on: The relative advantages of the different models of organizations. Three models comes to my mind: The “mom-and-pop” nonprofit vs. those sited at an academic institution vs. one that is corporate-backed, for example. Alternatively: Models for change also take different paths, such as community-building vs. data- or specimen-collection as the primary focus.

By the way, if you are new to these questions: Welcome! Some background:

Participatory Medicine is a model of cooperative health care that seeks to achieve active involvement by patients, professionals, caregivers, and others across the continuum of care on all issues related to an individual’s health. Participatory medicine is an ethical approach to care that also holds promise to improve outcomes, reduce medical errors, increase patient satisfaction and improve the cost of care.

If you’re ready to dive in, I’m sure there are other questions to discuss beyond the ones I list above. Please join the conversation on Medium or post a comment below.

Invent Health

As winter sets in here in DC, I’m warming up with memories of September’s Stanford Medicine X conference. I loved putting together a keynote that highlighted how the maker movement intersects with the e-patient movement — and how private sector and government leaders can benefit. This intersection, and the lessons we are learning from it, are the latest examples of how the internet gives us access not only to information but also to each other. That deceptively simple insight is, I believe, the key to unlocking the potential for innovation in health care.

Here’s an excerpt:

Stanford University posted the full video on their Facebook page and you can learn more about the Invent Health initiative I launched at the U.S. Department of Health and Human Services by reading the following posts:

Health care needs a jolt of innovation. Here’s how we’re approaching it at HHS.

Invent Health: The National Week of Making

The Invent Health Initiative: Hardware Innovations for the Low-Resource Environment

Invent Health: Finding Common Ground

The Invent Health Initiative: Hardware Innovations Hard at Work

Invention and Innovation in Emergency Preparedness

Empowering Inventors to Create Tools for Better Living, Better Clinical Care

Kid Inventors Focus on Health

The sky is now her limit

Check out this gem of a postcard from 1920, entitled: The sky is now her limit.Drawing of a milkmaid standing at the bottom of a ladder with titles of professions on each rung. At the top: presidency.

The detail I wish was true: that we had achieved wage equality before women gained political appointments. What is true:  The ratio of female notaries to males is 3 to 1 in some states.

Rungs of a ladder with professions and milestones listed including wage equality and political appointments.

And yes, if you can’t read it, the top rung is “Presidency.”

Source of the image: Library of Congress via Katie Casey on Twitter.

Source of the data on the notary public gender ratio (because, me being me, I looked it up): The Feminization of the Office of Notary Public: From Femme Covert to Notaire Covert  (PDF)

Documents of controversial times

I’m speaking today at Stanford Medicine X about what I’ve learned exploring the intersection between the Maker movement and health care (tune in at 4:25pm Pacific).

I posted a short version of my remarks on Medium, but I thought I’d post an image I was very happy to find to illustrate one theme: revolutions happen when people are connected not only to information, but also to each other. And that happens when people gain access to the means of production and distribution, as we saw in 1776, when Thomas Paine’s pamphlet, Common Sense, helped spark the American revolt against British rule.

Common Sense, a pamphlet by Thomas Paine (1776)

Common Sense, a pamphlet by Thomas Paine (1776)

Pamphlets can be printed cheaply, quickly, and in huge numbers. They can be transported in bulk and distributed to a wide audience. My favorite description of pamphlets is that they are “documents of controversial times.”

Here’s my question: What is the equivalent today? What are the means of production and distribution that are connecting people with information and with each other? Twitter, blogs — what else?

Managing the risk of food allergy

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

Beauty and wonder

Purple iris in front of a sunflower umbrella

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.

A little boy grinning and grasping Mr. Rogers's face

Photo by Jim Judkis

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)

What persists

“…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:

St Anthony's Chapel in Edinburgh, ScotlandSt. Anthony’s Chapel, built in at least the 15th century (and maybe even in the 14th), was a “skin hospice” — a place of refuge and treatment in the medieval sense of the word.

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?

What do you keep nearby, to inspire you?

Silver wind-up robot

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:

DocTom 1948 robotI 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.

Blue sky

Sky MeadowI 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?