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.

A thank you note to Jordan Grumet, MD

I Am Your Doctor, by Jordan Grumet, MDDear Jordan,

You begin your book with a beautiful description of your public writing as a love letter to your patients and to your father, who died suddenly when you were seven years old. My heart opened at that moment and I saw you in a new light. I’ve read your blog and followed your story on Twitter, but reading your book has been a deeper journey. One that I will recommend to many people. Continue reading

Imagining better outcomes for T1D with #MakeHealth

This post originally appeared on Diabetes Mine.

Forty-five makers, thinkers, designers and doers gathered in Cincinnati for a two-day meeting to kick off “Phase Zero” of a new initiative to imagine a new system of care for people living with Type 1 diabetes (T1D). The best way I can describe the group is that everyone was “game,” meaning up for anything, silly or serious.

I will leave the official accounts of the event to the hosts, the C3N Project and T1D Exchange. But I can share a few vignettes. Continue reading

“We just flipped a switch.”

Quote

“At one level, we just flipped a switch. It wasn’t a complicated, multi-faceted, variegated intervention. All we did was open up the doctor’s notes… Out of that came a cascade.”

– Tom Delbanco talking about OpenNotes and how a seemingly simple change — allowing patients to view clinicians’ notes from their visits — is having a profound effect on health care. (This quote is around minute 13.)

Check out the rest of the line-up for the latest RWJF Pioneering Ideas Podcast and listen to it here:

[soundcloud url=”https://api.soundcloud.com/tracks/170173928″ params=”color=ff5500″ width=”100%” height=”166″ iframe=”true” /]

Where do you see opportunities for simple changes in the way we pursue health? Feel free to comment here, on the RWJF podcast page, or tweet @LoriMelichar, who produces the show.

Put down the clipboard and listen

Here are the remarks I prepared for the Feb. 6, 2014, Engage & Empower Me class at Stanford Medical School. It’s a long post, so if you’d prefer to zone out, you can watch the video.

In thinking about this class, I thought a good framing question for tonight is: How does change happen?

  • How do political systems change?
  • How do cultural practices change?
  • How do business practices change?

And, more powerfully: How do you recognize when change is happening so you can surf the wave? Or even guide it and be part of team leading the change? Continue reading

Stanford Medicine X: Participatory research

Brett Alder and I spoke last night at Stanford Medical School’s Engage & Empower Me class:

Today is a travel day for me, back to the East Coast, so any comments posted may wait in the queue — but please let me know what you think! I’ll post more about this event when I’m home, including links to the studies and resources I cited. Some are listed on this Storify: Participatory Research. And check the tweets, tagged with #medx.

 

Is there a generational tech divide in medicine? And is that the main problem?

Jay Parkinson recently wrote a post responding to a question raised by Atul Gawande: Can technology be a change agent for health care? Jay’s answer focused on the generational tech divide in medicine today. One quote:

“Many of the most influential doctors practicing medicine today have an antagonistic relationship with computers. Change will only come in a massive way when the under-40 generation takes control.”

I tweeted his post, followed by a link to an essay I wrote about my grandmother, who grasped the potential of the Web immediately — at age 85 — and was a daily internet user until she died, more than a decade later. She is an example of someone who defied generational generalizations, to say the least. Continue reading

How do we know that social media is important to health care?

Update: the videos are up — thanks, @EinsteinMed!

On Friday, I spoke at the Albert Einstein College of Medicine, along with Kevin Pho, MD. During a planning call, the symposium organizers had shared results from a faculty survey: Fully two-thirds do not use social tools on a regular basis. Asking them, therefore, to spend a half-day learning about social media was a pretty bold request.

Inspired by Kathy Sierra to focus on the users’ (that is, the audience’s) needs, I began with a question that many busy clinicians might be asking:

How do we know that social media is important to health care?

Why should they take anyone’s word for it? Where is the evidence? Continue reading

3 articles worth your time

Here are three articles spinning around in my head today:

A Letter to Patients With Chronic Disease – written by Rob Lamberts, MD, in 2010, tweeted this morning by Ronan Kavanagh, MD. Key quote:

“So when you approach a doctor – especially one you’ve never met before – you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have.  You see why you scare doctors?  It’s not your fault that you do, but ignoring this fact will limit the help you can only get from them.”

I lived my “What If…” by Erin Keeley Moore. Key quote:

“Because I had been tracking his health so closely, because they were able to access his previous test results, because I felt empowered enough to speak up and express my perspective and desired course of action, and because I had given them the evidence to trust me, we found a mutually agreed upon solution that saved us two weeks in the hospital.”

Using Online Health Communities to Deliver Patient-Centered Care to People With Chronic Conditions by Martijn van der Eijk, et al. Key quote:

“Contrary to some perceptions, patient-centeredness is not just about being nice to patients, but engaging them to become active participants in their care…

[Online Health Communities] are a powerful tool to address some of the challenges chronic care faces today. A challenge now is to perform an in-depth evaluation of our platform, which is simultaneously being designed, developed, and deployed.”

If you’ve got time to take a look at any of these, what do you think? What has caught your eye or imagination this week? Please share in the comments.

“Googling is a sign of patient engagement”

Let Patients Help book coverWrap your head around that idea. It’s one of the many insights I learned from reading Let Patients Help — and I’m freaking quoted in that chapter!

But that’s E-patient Dave, seeing things that nobody else sees and, in this case, making up words like “boogloo” (Bing + Google + Yahoo).

As he writes: 81% of U.S. adults use the internet and 72% of them have sought health information online in the past year (see: Pew Internet: Health). This is not a sign of the health information apocalypse, he and Danny Sands say, but a sign of a groundswell. What if, instead of dismissing people’s interest in doing some quick (or in-depth) research online, clinicians gave them some guidance? That’s their advice: “If patients don’t know how to do the Boogloo safely, don’t stop them from engaging — teach them how…The solution is not to restrict and constrain. Empower the people: enable, and train.”

If you’re interested in getting up to speed fast on patient engagement, Let Patients Help is your passport.