Wednesday, June 18, 2008

Why I blog

This post is intended as an introduction for those who are new to me and want to understand the background for my views on the new world of healthcare.

My day job

I’m Director of Marketing Analytics for TimeTrade Systems, “Appointment Scheduling Experts.” We provide enterprise-scale SaaS appointment systems (customers) and a nifty, free, viral personal appointment inviter called TimeDriver, dubbed “the most unglamorously useful service” at DEMO ’08. My job is to bash on the e-marketing data, understanding search engine marketing as much as we can (it's all about helping people get what they want!), and run the CRM/SFA system. Oh, and I write.

I like to know what drives change, and I like it to be fact-based.

My cancer story

…is in a separate post. Short version, I suddenly faced death, went through a whirlwind of technology and treatment, survived, and returned with awareness and attitude.

Why do I blog?

I’ve had a lot of personal growth training from Landmark Education. During the crisis it helped me be awake and aware, in what some said was an almost Zen-like state of peace. (Not thrilled to have cancer, but at peace with what's so, and able to be clear-headed.)

As the story wound down, I was left profoundly aware that there was work for me to do, to take what I’d learned and bring it out into the world. Landmark is about expressing your true self: “The freedom to be at ease, regardless of circumstances. The power to be effective in the areas of life that matter most to you.” That's truth in advertising, and I saw that it's a self-expression for me to do this. (In other words, I can't not do it.)

I participated on the blog of Paul Levy, CEO of my hospital, long before I got sick. My handle there was Patient Dave. So I started my own blog, “New Life of Patient Dave,” at Thanksgiving, not knowing what I’d do with it.

How I became an e-Patient

In January I learned about the e-patients movement and met the people involved. I found people who’d already been developing the concepts I wanted to spread and had been gathering data to support it and make their case. I immediately “rebranded” myself e-Patient Dave: it’s who I am.

What’s an e-Patient?

E-patients are “enabled, engaged, equipped and empowered.” Many snapshot examples here. The term was coined by Dr. Tom Ferguson, a true visionary, who saw in the 1990s how the Internet would transform healthcare by enabling patients to be active partners in their own care. He saw this long before widespread broadband came about, and before any of today's "Health 2.0" tools existed. A true visionary.

If you want to understand the micromechanism of patients transforming healthcare, you must read “E‑Patients: How they can help us heal health care,” the e-patient white paper (PDF, wiki). If it were a Forrester report (147 pages) it would cost $10,000; it’s free. It's deep thinking that’s panned out, with real-life use cases and anecdotes.

Who’s in the e-Patient Scholars Working Group?

Extraordinary people who’ve been at this a long time, plus newbie me. I hesitate to name any one member, but two prolific contributors are Gilles Frydman (founder of ACOR) and Susannah Fox of the Pew Internet & American Life Project. Other world-changing members in the news recently: John Grohol’s Psych Central e-patient community just made Time’s 50 Best Websites 2008, and e-patient users at Joe & Terry Graedon’s People’s Pharmacy gathered the data that convinced the FDA there was a problem with the generic of Wellbutrin, which made the front page of the WSJ.

In my next post I’ll move into the business implications of what I learned while I spent a year as a patient then discovered the e-patient white paper. To get the most impact from the coming discussion, I urge you to read that paper too. It only takes a few hours – it's very well written. And aside from its business implications, it'll change your outlook on your own family's healthcare, which will be useful someday.

My cancer story - short version

I keep finding that I need to relate this year-long story in a short version. The full year-long journal is at bottom here. Here's the bulletized version.

  • After a routine shoulder x-ray in January 2007, the doctor said “Get back in here; there’s something in your lung.” Out of nowhere I was found to have Stage IV (metastasized) Grade 4 (most aggressive) kidney cancer, throughout both lungs. Eventually we learned it was also in my thigh, ulna, skull and pelvis. Yet I had no symptoms.

  • Desperately seeking information that could make a difference, I googled my ass off, identified my profile, and what I found was: “outlook is bleak,” “prognosis is grim,” “median survival time 24 weeks.” I scheduled myself into Bernie Siegel’s cancer patient weekend. I joined the ACOR kidney cancer list, started journaling on CaringBridge, and rallied family and friends. We updated my will.

  • The ACOR community (active kidney cancer patients and supporters, always up on the newest information) was my best source of reliable information.

  • I'm a strong believer in the power of how we interpret our experiences. My situation was scary, but I knew the question was "What can I do?" Regardless of the odds, I knew laughter helps health; I considered dropping out of chorus but my doctor said I should not start cancelling life activities I love ("It sends the wrong message, and the oxygen exchange will help you"); and then he said I needed to pack on some pounds to prepare for the battle ahead. So I declared my cancer strategy was to "Laugh, Sing, and Eat Like a Pig." That's what I titled my journal (below).

  • Coincidentally, six weeks after diagnosis I visited WETA-TV in D.C. to talk about PatientSite. That week I got my first symptom: a sore leg, which turned out to be a bone metastasis: a massive met eroding my left femur. The kidney was removed in March (laparoscopically!)

  • HDIL-2 therapy at Beth Israel Deaconess worked for me. I’m lucky; many people don’t qualify for it, and of those who do, only 20% respond. I did.

  • Days before the treatment started, a tumor erupted from my tongue. Gross. I don’t want to think what that would have become if I hadn’t had that early detection. After the first week of treatment that tumor fell off.

  • I continued researching, studying my radiology reports and lab results on PatientSite, and asking questions. Often I was wrong; being empowered didn’t make me an oncologist. Yet my phenomenal oncologist David McDermott and team said “I am happy to field your questions.” Tip: Arrogant doctors are “doctosaurs”; you don't need to put up with that anymore.

  • I gave my PatientSite login to medically knowledgeable relatives, who supported me in knowing what was going on.

  • In early May I fainted in the bathroom one morning and fell on the leg, which broke. Tip: before breaking a leg, you should faint, and wake up already in shock: no pain! Before you're out of shock, EMTs arrive and apply morphine! Pitfall: the ambulance ride to Boston, at rush hour, with powerful thigh muscles bouncing around and no bone to keep them in place. Solution: LaMaze-style breathing.

  • I rented a mobility scooter and bought a Prius (has a big hatchback to hold the disassembled scooter) so I could return to work. (I couldn't rely heavily on crutches because the ulna metastasis threatened to break.) The leg’s now made of steel.

  • In late June we passed the 24 week mark since diagnosis - the "median survival time" that I'd read about. I had a “What’s your drop dead date?” party at work; we blew razzberries at the cancer, and friends around the country did the same, at the same time.

  • My e-community grew astoundingly. Over 100 people have posted comments and support. When an email says “Did you hear, our friend has cancer?” with a link to go see, support can go viral.

  • My second round of HDIL-2, ending July 23 '07, was the last drop of treatment I’ve had. The near-deadly tumors had shrunk 66% before that round; they’ve shrunk another 75% since then, to 8% of their original size, with no more treatment. I am well. Update: make that 5%.

  • I still worked at my day job, on and off during treatment, all summer 2007, returning to work full time in August. My company TimeTrade Appointment Systems was phenomenal; it’s a great place to work. My insurance company, Harvard Pilgrim, was astounding.

  • It took a year after surgery for the leg to return to normal, but it's over. On July 4 I'll be on stage in Nashville with my chorus, competing at the world championships of men's barbershop harmony.
That’s the short version. The full text of my CaringBridge journal, "Laugh, Sing, and Eat Like a Pig" (500 pages), is available here. It's a potent example of Web 2.0 on the hoof.

Saturday, June 7, 2008

CaringBridge story

This weekend the Associated Press is publishing a story about CaringBridge and a similar site, CarePages. It relates the experience of several users, including my community and family. For more information, see my CaringBridge journal.

Update 6/8: Scientific American's blog has this:

Blogging--It's Good for You
The therapeutic value of blogging becomes a focus of study

... A study in the February issue of the Oncologist reports that cancer patients who engaged in expressive writing just before treatment felt markedly better, mentally and physically, as compared with patients who did not. ...
Visitors: if you're looking for great resources for self-education on how to be an effective consumer in today's healthcare system, here's a post from my CaringBridge site a few weeks ago:


As regular readers know, during this past year I've become a strong advocate of all the ways patients can improve their outcomes and their experience, becoming active participants in their care, especially by using the Internet.

Here are some resources:
  • The E-Patients blog: E-patients are "empowered, engaged, equipped and enabled." This blog covers a wide range of topics about the new world of participatory medicine. If you're a patient or family in need, educate yourself by reading the wonderful "white paper" (manifesto) available on that site.

  • A community support site, like CaringBridge. It saves you an enormous amount of time corresponding, and lets your supporters check in anytime instead of keeping up with emails.
     To see how it works, you can get the whole year's transcript (1/30/07 - 1/30/08) as a free download (one big file or single chapters), and read while you're sitting in waiting rooms. :)
On this blog I'm starting a beginner's guide to participatory medicine. It's my effort to share what I learned last year, with the intention that others can take a shortcut. In particular I recommend the chapter about "the five pillars of participatory medicine."

Those sites have many links to other web sites. Do your own exploring - see where it takes you.

And by all means, get out there and PARTICIPATE. In the world of blogging, that means you click the Comments link (or Guestbook, on CaringBridge), and enter questions or comments.

Be an e-patient: Ask what you want to know; say what you think.

Wednesday, June 4, 2008

Beth Israel Deaconess on ... Jeopardy??

One of my earliest posts on this blog was a thank-you to Dr. Drew Wagner, the amazing surgeon who removed my yucky-sticky-rude-tumored kidney, without cutting me wide open - just little tiny slits. Amazing.

In that post was a mention of the amazing simulation/training facility at his hospital (and mine), Beth Israel Deaconess. Well, today while chasing a link in the blog of that hospital's CEO, I came across this video clip: last December, their simulation center was featured on Jeopardy's Tournament of Champions!

And yes, they inflated my belly with that unnamed gas. (Yes, I have a bikini scar, and no, you may not see it.)

p.s. To be amazed at the openness of communication at that hospital, and the transparency they're bringing to the world of healthcare, go directly to that video site and page through the "More from this show" items on the right side. The video featured today is a real-life sample of how the hospital now approaches suggestions from workers at every level of the enterprise. What a beautiful example of empowering everyone, and the results it produces.