Illness in the Age of 'e'

Dr. Danny Sands (my primary physician) and I have begun an initiative to share our story in the hope that both patients and medical professionals will see new possibilities for how healthcare delivery can be improved and even transformed using technology.

The title of our message is "Illness in the age of 'e': How Connected Technology Changes the Patient Experience." One medium for the message will be a medical journal article, which is in process. Another will be a session we're co-leading at the Connected Health Symposium at Harvard in October.

Earlier this month Danny gave his first public telling of our story, in a guest lecture at the University of Waterloo (Ontario). It was a webcast, broadcast live over the web - the room where he spoke was almost empty, which is kind of funny when you see it, but that's how webcasts work: many can watch live, and now it's available for free viewing.

It's a 45 minute talk, with introduction then Q&A. It requires Internet Explorer. Watch it here. There are no slides, so you can listen to it like a radio show if you like.

As you may know, Danny is one of the original pioneers in the use of doctor-patient emails. He's also a member of the e-patient scholars working group, which I joined this year. In addition to his work as a practicing physician, he teaches at Harvard Medical School and works for Cisco Systems. Busy guy, with a unique combination of perspectives. I'm glad to have him as my doctor.

A personal note: this is the first time I've seen Danny talk about the human, emotional side of being a doctor, caring at a personal level about how his patients are doing. I remember, almost too well, the urgent cell phone call I placed to him in January '07 just after Ginny and I saw the first images that revealed the cancer ... those moments when I realized I might be facing the end of my life very soon. He was so compassionate and caring. And we got to work.

We really hope that sharing our story will lead to positive changes in how patients and providers take advantage of technology to transform the experience of illness.

Comments welcome, below.

Steal these slides

I just stumbled across the "attic" of Tom Ferguson MD, who was the "George Washington of patient empowerment," as CNN put it this month, citing his work since 1975 to create a world of freedom and power for patients.

(That's you, in case you didn't notice. Thank him.)

Those familiar with the e-patient blog know about the white paper DocTom's team completed after his death in 2006. But I didn't know some of his earlier writings are around on www.DocTom.com, a modest web site. It includes a few old slide shows, sans speaker notes. But the good stuff is the images: you can get the drift.

My favorites (above) are #88 and #89 from his 2003 slides. Here's my narrative:

In the industrial age, the means of production and ability to create value were centralized in massive facilities. If you didn't own the factory, you didn't have freedom and power.

In the information age, those with access to information have access to power and can create value.

Those slides were made in 1995, when the Web had just been born, but they hit the nail on the head: today we have access to tremendous resources, and that empowers and enables us.

Please don't interpret these slides as meaning that in the world of the future there will be no doctors. That's idiotic. Rather, Tom's vision is that "we the people" have a lot more ability to contribute than was once thought. And both costs and quality can improve as a result.

Compelling evidence to support this was collected into the white paper (above). Further independent evidence from around the world is provided by the Patient Centered Primary Care Collaborative, about which I wrote in May.

Steal Tom's slides. Show them to others, put them in your decks when you give talks. And re-view the PCPCC slides, with their data on cost and quality. It's a new world out there - feed your head!

CNN's "Empowered Patient heroes" recognizes e-patient pioneers Tom Ferguson and Gilles Frydman

Cross-posted from the e-patients blog, where I'm an author.

Today's entry in the CNN.com "Empowered Patient" series, by medical correspondent Elizabeth Cohen, is titled Empowered heroes' hard lessons now help others:

This week, as we reflect on American heroes, we're saluting a few "patient empowerment" heroes, whose experiences with the health system have inspired them to help others.

I'm someone who has personally benefitted from the road these pioneers paved and lit, so I'm very glad to see this growing public awareness of their vital work.

The column's details page includes stories of ordinary people who, not unlike America's founders, had experiences that left them feeling that "we the people" could create a better reality with a new balance of power. They set out to create a newly empowered citizenry, and they did. Consider:

• About e-patient founder "Doc Tom" Ferguson, Cohen writes: "If there's a 'George Washington' of the empowered patient movement, it's Doctor Tom Ferguson. In 1975, at a time when many doctors were still viewed as all-knowing and infallible, Ferguson, a physician, author, and researcher, started writing about patients advocating for their own health care."


• Michael Cohen, whose work on medical errors thirty years ago led him to found the Institute for Safe Medical Practices.


• Gilles Frydman, whose experience with his wife's cancer in 1996 led him to form ACOR, the network of free cancer listservs that made such a difference for me during the peak of my cancer experience last year.
  
  
• Ysabel Duron, KRON news anchor whose 1998 encounter with Hodgkins Disease led her to notice (among many other things) that Latinos were largely missing from the cancer treatment scene; she founded Latinas Contra Cancer.
  
  
• Trisha Torry, whose incorrect cancer diagnosis in 2004 led her to found www.DiagKnowsis.com. She also runs patients.about.com.
  
  
• Victoria and Armando Nahum, whose son's 2006 death from an in-hospital infection has led them to form the Safe Care Campaign, teaching about preventing infection.

I want to point out a few things.

First, most of these people took a highly adverse experience and used it to create a new reality that had never existed before. To me this is a high expression of the human spirit.

Second, none of them did it for personal gain. This is people creating things for the public good.

Third - and perhaps most important on this Independence Day in America - although each of them is "just one person" (or couple) facing a massive establishment, think about the results we have today. It's commonplace to research one's own medical condition, doctors increasingly welcome such participation, people increasingly know it's their right to ask questions of their doctors (and the whole system), and more and more, people are banding together (especially on the Internet) to share their knowledge with others.

We still have a long way to go, but increasingly people are empowered to participate in their care.

I never knew Doc Tom, our "George Washington." He died before finishing his manifesto, "e-patients: how they can help us cure healthcare." Members of the e-Patient Scholars Working Group completed it in 2007 (PDF, wiki). The cover carries one more allusion to 1776: "I felt I was looking over Thomas Paine's shoulder."

When I first found this group in January, I said something about "the Sixties motto 'power to the people,' made real in the world." I guess it goes back farther than that. Thanks to all who've done the work so far - and thanks to CNN's Cohen for spreading the word.