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.

I’m RWJF’s Newest Entrepreneur in Residence

This post originally appeared on RWJF’s Culture of Health blog:

The Entrepreneur is inI am thrilled to begin my job as the entrepreneur in residence (EIR) at the Robert Wood Johnson Foundation.

You might think that the EIR role is traditionally associated with venture capital firms, not foundations. But scratch the surface and you’ll find commonalities between the two industries. Both VCs and philanthropists have daring ambitions, place lots of bets, and hope for a big pay-off every once in a while. The difference is that a philanthropy like the Robert Wood Johnson Foundation places a priority on societal dividends, such as greater access to health care or a reduction in childhood obesity.

I also like this definition of entrepreneurship: “The pursuit of opportunity without regard to resources currently controlled.” That fits the Foundation to a T as we pursue the audacious goal of building a Culture of Health in the United States. Continue reading

I’m leaving Pew Research

Believe it or not, 14 years ago, the idea of using the internet for health was a novel concept. That’s when Pew Internet published its first report about the social impact of the internet on health and health care, raising eyebrows across the U.S. Our data was cited in mainstream news outlets, in JAMA, and, most important to me, drew the attention of Tom Ferguson, MD, an online health pioneer who became my guide to the world of e-patients.

I will always be grateful for the incredible latitude I was given to explore and experiment at Pew Internet, thanks to Lee Rainie and our sponsors, the Pew Charitable Trusts and the California HealthCare Foundation. We fielded six national surveys devoted to health and five major fieldwork projects in online patient communities. We were explorers in uncharted territory – areas that would become the most important real estate in the industry – and we were breaking glass on a daily basis, always trying new things. It has been my honor to translate that research into storytelling that benefits decision-makers of all kinds.

For me the new truth is that the most exciting development of the connected health era is not access to information, but access to each other.  The implications are enormous for us all: consumers, clinicians, policy makers, and business leaders. The power of community in health can revolutionize the way care is experienced and delivered. It is our job as an industry to bring that to life, to legitimize and formalize the very real and quantifiable role that community plays in our health. I am called to pursue that mission. So I’m writing a book to drive the idea forward (more on that in another post) and leaving the Pew Research Center to commit to this idea full-time.

In September I’ll also start as an Entrepreneur in Residence (EIR) at the Robert Wood Johnson Foundation, the largest philanthropy in the U.S. devoted to the public’s health. Led by Risa Lavizzo-Mourey, RWJF’s focus on building a culture of health overlaps with my vision; RWJF is uniquely positioned to execute on this audacious goal.

By taking on the EIR role, I’m following in the footsteps of Thomas Goetz, who inaugurated the position and wowed us all with initiatives like Flip the Clinic and Visualizing Health. I can’t wait to get started, taking this definition of entrepreneurship to heart: “the pursuit of opportunity without regard to resources currently controlled.”

The power of community must be unleashed on health if we are to achieve the vision we all hold so dear – a world where empowered individuals and families make informed choices that result in living as well as they can for as long as they can. The wisdom people have about themselves and their loved ones is as vital to their health as the insight they gain from clinicians. Simply put, my goal is to help people understand how powerful they are.

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

Never assume that what you are seeing or experiencing is everyone else’s reality.

Atul Gawande can shine a bright spotlight, even with just a few tweets. On Saturday he linked to an article about new social media guidelines for physicians which states:

Aside from not “friending” patients [on Facebook], the guidelines also recommend the following to physicians:

• Don’t use text messaging for medical interactions, even with established patients, except with caution and the patient’s consent. Continue reading

The e is for engagement

Painting: "Skinny Genes" by Regina Holliday for Stanford Medicine X

Regina Holliday played with the idea of "Skinny Genes" at Medicine X

What if we redefined the Quantified Self movement to include everyone who keeps a pair of “skinny jeans” in their closet? What if the 85% of U.S. adults who own a cell phone understood that it’s potentially a tool for health tracking? What if everyone designing health care tools first talked with patients and caregivers about what they need, instead of making assumptions, without input?

These were the themes of two talks I delivered recently, first at Stanford Medicine X and second at the Connected Health symposium. Here’s what I said:

The e in e-patient stands for engagement. Continue reading

Healthcare Out Loud

Last fall, at the e-Patient Connections conference, I gave a sneak preview of some survey results which are set to be have been released on the Pew Internet site on Monday, Feb. 28. I hoped to spark new ideas for a savvy, plugged-in audience and I ended up surprising even myself with some of what I talked about. Watch:

Around minute 7, I share the results of a survey question that was inspired by some research conducted in 1999 by Tom Ferguson: E-Patients Prefer eGroups to Doctors for 10 of 12 Aspects of Health Care. Continue reading

Participatory medicine and health data rights on NPR–Susannah Fox

NPR’s Morning Edition story, “Patients Turn to Online Buddies for Help Healing,” combined research and real-life examples, participatory medicine and health data rights.

Much of what I said during my interview with Joseph Shapiro is based on what I’ve written and read here on e-patients.net, so, first, thank you.

I’ve already started answering questions on Twitter about some of the assertions in the story, so let’s keep the conversation going here, too. Continue reading

The Social Life of Health Information–Susannah Fox

The Pew Internet/California HealthCare Foundation report, The Social Life of Health Information, is packed with new findings from a survey of 2,253 adults, including 502 cell-phone interviews, conducted in either English or Spanish.

We spent a bundle of money on making this a random sample of the U.S. population, but guess who got a call on his cell phone? None other than e-patient Dave! He had never talked with me about the survey questions or reviewed a draft, so I decided to keep his interview in the mix, but he surprised the heck out of the interviewer when he finished the sponsor identification for her at the end.

It’s a long report, so here is a cheat sheet. Continue reading