Physicians as coaches, part 2: "Embrace knowledge symmetry."

Cross-posted from the e-patient blog

I don't get surprised these days as easily as I used to before I got "e." But something popped my eyes open last weekend, and I dug into it. It goes to the heart of where the power is, in the doctor-patient relationship. But not just the power – the responsibility for getting it right. Yikes.

A new book, Patient, Heal Thyself, is reviewed in the 12/26/08 New England Journal of Medicine (review here; subscription required). I’m a bit stunned by author Robert Veatch’s apparent position on “patient autonomy,” but I soon learned that his utopian-sounding views may be closer to reality than I imagined.

Still, it seems a bit much. Reviewer Mark Hall, J.D., of Wake Forest, says:

Veatch’s proposals are so startling that readers of this review may doubt my characterizations, so I will quote liberally, starting with its excellent title — Patient, Heal Thyself. This injunction captures Veatch’s two main points: Patients alone are in charge, and they have no choice but to assume this active role. According to this “manifesto,” doctors “will no longer be seen as capable of determining what will benefit their patients. It is patients themselves who, in the world of the new medicine, have to take charge.”

As someone whose butt was saved by excellent medical care, I find it unimaginable to consider doctors “incapable of determining what will benefit” me. What, like I was going to think up high-dosage Interleukin-2 on my own?

But whether we accept every word in the book (which I haven’t yet read), let’s step back and look at those two main points.

Patients alone are in charge: Working group colleague Charlie Smith MD wrote about the review, too. He reminds me that patients are indeed in charge of what gets done; a major concern doctors discuss all the time is compliance: whether we slacker patients will actually take the recommended medication (I do), heed dietary recommendations (oops), get checkups at recommended intervals (mezza-mezz), etc.

And I realized, it goes beyond that: a friend of my family developed kidney cancer a year after I did, and elected not to get treatment where I did – he stayed with his local hospital (also in the Boston area), and is dead now. Who was in charge? Clearly he was. And that leads to the second assertion:

[Patients] have no choice but to assume this active role. A vital question is whether the patient realizes this – or, more to the point, realizes the implications. Did our friend fully comprehend the implications of his choice? Was he “e”? Was he empowered or hopeless? Talking to him, I was never sure, but it didn’t feel like an active role.

But then I thought back to “Doc Tom” Ferguson’s visionary slides, dating back to 1995, predicting that patient access to medical knowledge would turn healthcare on its head. (Click to enlarge.)

The vast majority of tough thinking and wonk work on blogs like THCB, and at conferences, is about the ugly tangled mess American healthcare has become. I'm not belittling that work – it needs to be un-messed – but while that work continues (and regardless of its progress), the real juice for each patient now, today is in how well we take responsibility for our care, by informing ourselves and making choices.

Charlie nailed it in the close to his post: "What lessons does Mr. Veatch's book leave with us? ...It is a good wake up call for physicians. We need to embrace the 'ePatient Revolution', recognize that the patient MUST be the one who is in control of their own health care, assist them in achieving this, and not be tempted to allow that to interfere with our professional self esteem because, in my view, it in no way threatens it!"

That echos last week's post "Physicians are coaches, patients are players."

Or, as my primary physician Danny Sands put it when he and I spoke at Connected Health in October:

• Embrace knowledge symmetry.

That's the core of it. See our banner graphic – "health professionals can't do it alone." We the patients do need to accept that not only do we have the right to guide our care, doctors need our help – and we need their guidance.

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.

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.

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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.

Beginner's Guide, Part 2

This series teaches what participatory medicine means - a guide to learning to participate actively in your medical care. With the right approach, patients and families are learning that they can be truly valuable contributors to their care, for a host of reasons.

A lot of the series is things I learned in a hurry when I got my Stage IV cancer diagnosis. I pieced these thoughts together in the first few weeks, then adjusted and learned on the fly, with no time to lose. Ironically, a year after my diagnosis (when I was essentially "all better"), I learned that all these principles have a framework I'd never heard of: "e-patient," where e means empowered, engaged, equipped, enabled.

Last month we covered Beginner's Guide, Part 1. If you haven't read that post, please do, because here I'll presume you know what I'm talking about.

Five pillars of participatory medicine

This post covers a new model I've recently thought up -- five pillars of participatory medicine. The model may evolve, but here it is at this moment:

1. Excellent providers (doctors, nurses, etc, and excellent hospitals)
2. A strong peer community (other patients dealing with your condition, and/or their families).
3. A strong support community.
4. Awareness of new realities and data that have overthrown obsolete principles about who knows what, and what info is reliable
   
5. Good, effective research skills
   

You, the e-patient, are at the center of all this - these are the instruments of your care that you orchestrate. Perhaps more than you can imagine, even though you're not an MD, your role in the orchestration is entirely within your scope of control - and responsibility.

Lord knows the insurance companies aren't going to pay anyone else to do it. And nobody else could possibly be more motivated than you.

This post will cover part 1.

1. Excellent providers

You have every right to ask who's the best physician in the world for your case. I'm not saying you should ditch yours - how would I know?? You might have the best in the world for your case. I'm just saying it's not at all rude to ask around.

Here's the thing: whether you're in crisis or not, you'd better get ready, because your time will come. So get comfortable asking sensible questions of your caregivers, even for non-crisis conditions: "Is this going to hurt?" "Is there any alternative?" "How often does this procedure harm people?"

I had two cases earlier in life where providers didn't like me asking questions. If that happens to you, run. In one case I actually got up and left the office, and I'm glad, because it turned he left the country a year later on tax evasion charges. In the other case the doctor got huffy when I asked if there'd be a scar, then did a much bigger procedure than necessary - and never came to see me after surgery.

My oncologist is one of the best in the world for my cancer, immensely knowledgeable and skilled. He accepts emails (which I keep short), and when I thanked him, he wrote "I am happy to field your questions."

Here's a tip: #2 (in the next post) can help you with #1.

December update: the series has not yet been continued. Instead, later I did a series summarizing the white paper, starting here: http://patientdave.blogspot.com/2008/08/e-patients-how-they-can-help-us-heal.html

A (female) e-patient clone of you know who

While empowered patients are primarily known for being actively engaged in their own health care, that still leaves plenty of room for having Attitude with a capital A. There's power in having attitude, in the face of circumstances you didn't ask for.

Over on the e-patient blog, Susannah Fox of the Pew Internet and American Life Project has been doing a great series of interviews with e-patients. Susannah has a knack for finding stories that really teach something about participatory medicine.

Her first interview was with "Stirrup Queen" Melissa - now there is a woman with some extraordinary attitude and expressiveness, with a lot to say about the world of infertility: phenomenal resources on her blog, and a boatload of "in your face, I'm livin' my life no matter what."

The second was with Amy Tenderich of DiabetesMine, one of the first and best-known patient blogs in the world. She's been in Newsweek and all over creation, and her site too is a treasure trove of resources - the blog name is a pun, meaning both "my" and "gold mine."

The third is with yet another astounding woman,* Sheryl Stein. I urge you to to read that interview, and especially the comments, where Sheryl details her own approach to using the Internet to alter the course of her disease - or at least her experience of it.

But THEN I actually went to her blog and found out she's a WACKO. At least on some days. Look at the YouTube video in today's post.

Her attitude does NOT remind me of anyone in MY mirror.

But her blog sure looks better than mine. She's also a primary contributor to DC Urban Moms (article), a classic online community of peers helping peers.

Again, I urge you to read those interviews, including readers' comments. Each is short and together they do a great job of illustrating what all this e-empowerment / "participatory medicine" stuff is about: the world of medicine is so complex today that we patients can truly make a difference through our active participation.

*Are all the empowered patients in the world women? Where are the men with vastly rich blogs? Mine isn't vastly rich, yet! Go find one by a guy, and tell me, will ya?

Beginner's Guide, Part 1

Updated 4/13/08 to make the history more accurate.

I'm starting the process of developing a Beginner's Guide to E-Patient, or you might call it a Patient's Guide to Participatory Medicine. I have a headful of ideas and I don't know where to start. So if there's anything you want to ask, you might as well say so, and I'll write about that.

--------

Meanwhile, here's the first item:

What's with this "e" thing??

The "e" in e-patient originally stood for electronic, email, that sort of thing, as used by patients. It was conceived (to the best of my knowledge) by Dr. Tom Ferguson, founder of the e-Patient Scholars Working Group. It later came to represent empowerment - patients being empowered to be active partners in their care - and has now evolved to "empowered, enabled, equipped, engaged."

The importance (and viability) of empowered patients, actively engaged and participating in their care, is detailed in the e-patients manifesto.

So what does that mean to you?

If you're new to "e" and you're here as a physician, journalist, or researcher, I ask that you change your perspective on healthcare delivery, so the hospital and doctor aren't at the center - make the patient be your starting point, and look outward from there to see what happens around that hub.

Put yourself in the point of view of a patient (your time will come), and read on.

If you're here as a patient, or to support a patient, or as someone who might be a patient someday, this is your starting point.

When I got my cancer diagnosis last year, I had no idea how much of a role I was about to play in my own care - much less why it was important for me to do so.

When you have time, I urge you to read the manifesto (above). Written by doctors and skilled researchers, it's full of information about

• How the healthcare system is different today from what I imagined
• How patients are changing their outcomes by actively participating (with their doctors) in their own care
• How some doctors, but far from all, are "getting it" and making the transition to empowered patients being active participants in their care, and what you can do if yours isn't
  
• Why in today's world of exploding medical information and treatments, the best medical journals are often no longer the most useful resources - online peer communities are.
  
• How patients are using those online peer communities (such as ACOR) to connect with others who share their disease, their concerns, and their personal research findings
  

In several hours that document will change your approach to participating in health care. You'll become empowered (free to act) and you'll see why you want to be actively engaged in your care.

The next step will be to become equipped and enabled. More on that later.

Part 2 is here.

E-patients: the system is valuable, and so are you

Yesterday my wife sent me a very sad story titled Four Get Cancer from Teen's Donated Organs. This morning I wrote a heartfelt post about it on the e-patients blog. If you're trying to understand what the role of an e-patient is, in today's healthcare world, I urge you to read it.

The post is not about the tragedy itself; it's about one of the pivotal points of learning in becoming an e-patient.

One of the central barriers to "participatory medicine," as we're calling it recently, is that some doctors (and patients) don't yet understand that there's far less risk in patients self-educating on the Internet than was once feared. The e-patient white paper (available on that blog site) documents this in some detail. My post looks at this incident as a painful example of that point.

It's really, really important that you understand that lesson and explain it to others. It's the first step toward becoming a really effective partner in the care you're seeking, whether it's for yourself or a loved one.

When the Patient is a Yahoo

I also posted this on the e-patients blog.

There's been a lot of talk about Scott Haig's November article in Time, When the Patient is a Googler: Alan Greene wrote on the e-patients blog; it was a hot topic on the NY Times "Well" blog; and Susannah Fox said:

I'd love to hear what people think about the issues raised, but I also want us to notice the use of the term "googler" to describe the group we would call "e-patients" (and that Harris Interactive would call "cyberchondriacs.")

And this, from Network World: When the patient is a Googler and the doctor is a pompous ass.

There seems to be a binariness to the conversation: some think patients should just mind their own business (i.e. stick to the listening side of the desk), others think patients have every right to mind their own business: be actively involved in researching and knowing their condition, and bringing things to the table.

What's missing is the aspect of building an effective partnership. As a living specimen of the patient side of things, I have a couple of observations.

1. How dare anyone tell me not to try to find out what's going on inside my body? I wouldn't tolerate that from a car mechanic and I won't tolerate it from a doctor. That attitude is obsolete.
   
   
2. At the same time, if I want partnership, I get a responsibility too. At the core are two-way respect and open communication: freedom to express, freedom to bring things up, freedom to be heard - and responsibility to listen and not abuse the privilege.

As I worked with my care team at Boston's Beth Israel Deaconess, they were open to hearing my thoughts and concerns, and at the same time they had the people skills to guide me effectively, e.g. "That's not where we need to focus right now." Having chosen doctors I trust, I was willing to take the coaching. (All this was before I'd ever heard "e-patient" or "participatory medicine.")

When you look at it that way, it becomes clear: the patient in Haig's article would have been a nightmare with or without Google. The real title should have been "When the Patient is a Yahoo."

For my part, I've started work on an "e-patient bill of rights and responsibilities." Patients, I'm curious - what would you expect in a good partnership of any sort: marriage, car repair, banker, medical?

Speak up: this is a living example of Web 2.0 means we get to say. We can define groundrules that work, creating a new world that will benefit us, our children, and generations to come. (I've already started the conversation with a med student I know on Facebook, and she's psyched.)

A closing oddity: Google's summary of the article contains a phrase that I can't find in the article itself: "A well-informed patient can be a good thing, so long as he or she's got the right kind of information." Doing a View Source shows that the phrase only appears in the meta-tag for the article's description:

<metaname="description" content="A well-informed patient can be a good thing, so long as he or she's got the right kind of information">

That sums it up pretty well. I wonder how it ended up in the metatags and not in the article! Did somebody edit it out, just as it was going to "press"?

Susannah Fox's keynote at Health 2.0

Thanks to Amir Lewkowicz of Inspire.com for this video link. He put it in a comment on yesterday's post, but I'm not sure the long link fit, so it's included again below.

Earlier this week, at the Health 2.0 conference in San Diego, Susannah Fox of the Pew Internet and American Life project gave a terrific yet short keynote speech. I wouldn't be surprised if we someday mark this as a cusp, a turning point. It's the best quick answer to "What's all this e-patient stuff?", plus a bonus super-sharp insight into what the future holds.

Spend 10 minutes watching the video clips below and you'll pretty much be up to speed.

• Video extracts of Susannah's talk, plus a post-interview, here.
• Full text, with her annotations, here.
• Article about the event on ReadWriteWeb.

Susannah's a member of the e-Patient Scholars Working Group. So is my primary physician, Dr. Danny Sands. I love these people and what they're up to; they are actively working at making reality of the principles, practices and ideals I acquired during my cancer adventure. (And man are they smart and fun!)

"Succeeding in online health" lunch: take-aways

My take-aways from the speakers at today's lunch-n-learn:

• Lisa Neal teaches the world's only (she believes) university course about online medical communities, at Tufts Medical School. I am very glad to have met this woman - we'll be talking.
  
  
• Inspire.com is an ACOR-like set of online communities. (ACOR is specific to cancer; Inspire mostly isn't.) They offer it free to not-for-profit organizations. Nice!

• Amir Lewkowicz (of Inspire) raised an issue brought up by e-Patient member Susannah Fox at this week's Health 2.0 conference in San Diego: what about the people around the world who aren't online like you and me? How does our movement reach them?

• A huge part of the discussion (today and elsewhere) concerns "safety" of the information people acquire by researching online. I put "safety" in quotes because it's a big mistake to think that well-vetted certified MD-approved info is the best path to safety: every bit of misleading or useless info I got last year came from well-vetted web sites. The only indication of quality that I found was whether other "consumers" of the information (patients and their families) say the info is reliable.
  
  
• I stood up and remarked that we all use car ratings guides when we buy a car, and that the same will surely happen with online consumer health info.
  

• John Lester of SecondLife (also one of the e-Patient Scholars, whom I met last weekend in Texas) addressed the safety question in a characteristically fun/ny way: "If fire were invented today, there's no way it would get on the market. You'd have to say 'okay, we won't make it too hot, and we'll add warning labels...' If you'd told someone 200 years ago that we'd be roaming around in these things that have hundreds of little controlled explosions of fire every minute, they'd think you're crazy." Amen, bro. Things that seem insanely impractical today may only seem that way because we're two generations too young!
  

• I've always wondered what real use can be made of SecondLife - the classic "is it just a toy?" question. Well, it's so richly experiential that someone has used it to show others what a psychotic hallucination is like. Others are using it for first-response training. Autistics are using it to develop their social skills.

• Kids are using virtual gaming to attack cancer cells - an online manifestation of the well-known practice of visualizations as a way of fighting cancer. (One kid I read about visualized little sharks going through his veins eating cancer cells. Now, I suppose, he could create that happening "in-world," as the SecondLifers say.)

Last weekend at the e-Patient Scholars Working Group retreat, I had the profound privilege of being with Kevin Kelly, co-founding Executive Editor of Wired and author of New Rules of the New Economy. He blew our minds by pointing out that in 2007 the Web became just 5,000 days old.

The first 5,000 days brought web sites, Google, Travelocity, blogs, webcams, Napster, Facebook, SecondLife, and a lot more. Imagine: what will the next 5,000 days bring?

"Succeeding in online health" lunch meeting

The Mass. Technology Leadership Council is (as I type this) having a "lunch and learn" session titled "Patient, Heal Thyself: How to Succeed with Online Consumer Health Sites." When I first read the title, I heard "How to make a great online consumer health site," but hey, it's a high-tech business lunch, so it's about how to make a buck at it.

That's fine with me - the "helping people save their butts" community can use some infusions of cash, as investors take advantage of the reality that billions of people are entering the phase of life where they get serious illness and want to have their butts saved. Build great, useful online health resources, and the world will improve.

Here's a clue, investors: to build success, don't sit in a conference room figuring out what someone would want, and do NOT emulate the many web sites that say "Here is what we believe you should want to know." Just ask patients what they want to talk about.

I'm not being anti-establishment here, I'm being businesslike. Peer-reviewed medical journals may be full of reproducible experimental results, but (a) they may not answer what people want to ask, and (b) as happened in my cancer, the best current peer-reviewed journal articles may not be useful anymore. Ironically, people whose butts are on the line may find (as I did) that those are not reliable resources! They are necessary, to be sure, but they may be obsolete, and they may not even answer the questions people want to ask.

Tom Ferguson MD, founder of the e-Patient Scholars Working Group, felt strongly that we often have it upside down, when we have doctors decide what people need to hear. And as we move into e-health, I think he' s right: failure to ask patients "what do you want to hear about?" will be as deadly (business-wise) in online health as it was in any other industry that went through its "railroad" phase. (Can you say "Marketing Myopia"?)

It's a simple business principle - ordinary consumer market research. Do not start by asking the providers what they think we should hear. Use them as a highly valued resource, but don't start by asking them.

Our cancer journal is e-published!

I'm so happy to announce that my community's CaringBridge cancer journal has been published online, for anyone to download (free) or read online. Laugh, Sing and Eat Like a Pig: My Year of Living Cancerously now has an official home on the ACOR web site.

Please spread the word about this book. I ain't in it for the money - I'm in it because 4,000 people a day (in the US alone) discover they have cancer, and face that moment of "What on earth do I do NOW??" I know that feeling very well. Some look for what to do next; others don't even think they can do anything — they just think they're screwed and go into depression.

My intention in publishing this is to demonstrate to both groups that they have a lot to say (and do, and be) about how they face their situation, no matter what the outcome. People who participated in the journal year captured in this book say they were inspired and empowered by the experience, so we're sharing it.

The title is impish and bratty, intentionally so. :) It's the approach I chose to take to the news that I had a lethal cancer - a summary of the advice I got in the first few weeks after diagnosis, before the online journal began. "Laugh" is for the healing power of laughter, as famously discussed by Saturday Review editor Norman Cousins in his book Anatomy of an Illness; "sing" is the advice my doctor gave ("you don't want to stop doing life activities that you love - it sends the wrong message"); and "eat like a pig" was a diet the hospital sent me, to increase my caloric intake, to combat weight loss and prepare for the battle ahead.

Admittedly, "laugh, sing and eat like a pig" is not a conventional approach to a deadly diagnosis. But that's kind of the whole point. And the whole story is true, every word.

It starts with news of the diagnosis, and planning our approach; discovering the phenomenally valuable cancer communities on ACOR.org; starting the online journal; readjusting life to deal with the pain that arose when the cancer ate away at my thigh bone (eventually breaking it); numerous posts from the "department of transportation," learning to get around by crutches, walker, wheelchair and motorized scooter; extraordinary surgery to completely remove the primary tumor, which had already attached itself firmly to the bowel and a muscle on my spine; learning the uncertainties of the severe immune treatment that we selected to then attack the metastasized lesions from skull to lungs to ulna to thighs; the treatment weeks themselves, including many posts from inside the hospital (it is SO COOL that Beth Israel Deaconess has free wireless!!); the experience of getting MRIs, bone scans, CAT scans and waiting for the "scores"; and all the while dealing with the complications of owning two houses on diminished income, because our Minnesota house hadn't sold yet.

The book has a lot of "e-patient" in it, though I didn't even know the term existed until a few weeks ago (January 2008). See, toward the end of 2007, as my lesions continued to shrink, the question arose, "So what do we do with this year's incredible experience?" When the e-patient discovery was handed to me by my doctor, the answer fell in my lap. So my further hope is that the book will let newly diagnosed people learn about the tremendous resources and choices made available through the e-patient movement.

Please send any comments on the book, pro or con, feedback on clarity or message, anything. The voices of a hundred people are captured in the book; I hope we ultimately touch a million or more. (And don't try to tell me what's realistic and what's not!)

I'll leave you with this, which is the end of the prolog:

At the start of this adventure, I really did not know how many months of life I had left. I did know I was going to do everything in my power, whatever that might be. I also knew that whatever time I had left, I was going to live it like crazy … to laugh, sing, and eat like a pig.

I challenge you to be fully alive, every moment that you have left in life. As you read this book, please listen for how you can face every moment with power and grace, no matter what your circumstance. You have the choice. Be responsible for your own outcomes.

So, how perfect is this? While researching Norman Cousins tonight, I ran across this quote:

"Death is not the greatest loss in life.
The greatest loss is what dies inside us while we live."

Amen. No matter what your situation, no matter what your outcome, my most fervent wish is that you be fully alive for every moment you live. That’s the essence of the story you’re about to read.

The book's location, again, is here.

Don't be a jerk to your partner.

As I learn about the e-patient movement, I sometimes encounter pathetic stories that aren't helping anything. Time's tormented When the Patient is a Googler is a worst-case nightmare - a doctor whose first exposure to an intense googler was a patient who (with her three year old) would be a nightmare in any office visit, with or without Google.

Don't do that. The point of the e-patient movement is to create partnership with your providers.

If your physician is new to the idea, share, don't clobber.

An e-patient writes in Newsweek.com

Newsweek.com has published A Healing Blog, a well-written article by the amazing Amy Tenderich, author of DiabetesMine, a prize-winning diabetes blog. (Amy just added a comment to my first e-patient post.) Here's a perfect e-patient snip from her article:

I'm just astounded to think that one sick mom in California can reach out to so many fellow patients, create a community, and actually turn the whole thing into a business.

Amy's story illustrates a major aspect of the e-patient movement: that if patients (the consumers of healthcare) get to start conversations and other patients get to take those conversations wherever they want (a.k.a. "We get to say"), the most useful conversations will thrive, and all of us - consumers and providers alike - will benefit.

Chapter 2 of the e-patients white paper lists seven principles of patient-driven healthcare. Amy's article illustrates three of the seven:

1. E-Patients have become valuable healthcare resources and providers should recognize them as such.

3. We have underestimated patients' ability to provide useful online resources.

7. The most effective way to improve healthcare is to make it more collaborative.

Plus, it quietly suggests support for a fourth:

4. We have overestimated the hazards of imperfect online health information.

#4 doesn't say there are no hazards - you and I need to be smart consumers, same as if we're buying a car or a camera. (See Lucy Jo's brilliant comment on last week's post.) It says that those risks are manageable: all of us (patients and providers alike) can publicly holler "BS!" when we see it. In the process, we learn to find trusted resources - like Amy's blog.

Welcome, Amy! Keep spreading the word, and keep in touch.

Web 2.0 means we get to say.

My post below mentions "2.0" stuff. I've been dealing with this subject at work for the past year, but I know a lot of you have only recently heard this "buzzword" buzzing around like an unexplained annoying gnat that keeps getting in your ear, making it hard to think.

The e-patients blog yesterday has the best layperson's introduction I've ever seen for these key aspects of Web 2.0:

• blogs
• wikis (Wikipedia is just one example)
• social networks
  
• social bookmarks.

Worth a view. (These little "training videos" require having your speakers on.)

The big deal about all this is "user generated content" (UGC). See, in the early days of the Web (now known as Web 1.0), the Web was read-only: all web "content" (the stuff you read or view) was created by people who had access to a Web server and knew all the geeky stuff you needed for hand coding a web page.

In contrast to that, today we can create content: Look, I'm sitting here right now, blogging about whatever I want - just as if I could conceive and write a book and get it printed and have it appear in every library in the world, instantly. (Because it IS, right now, available on every computer in the world that has an Internet connection, including my iPod Touch.)

This that you're reading, right here, is user-generated content.

And the big thing about THAT is that it's enabled us to spout our opinions, for instance rating books on Amazon or even posting our own book reviews, as short or as long as we want.

What this means in the world of e-patients is that we ourselves get to talk about anything we want; instead of reading only what a magazine editor thinks we want (or need to know), we ourselves get to start any discussion we want and take it anywhere we want.

You could put it this way: Web 2.0 means we get to say. We get to say whatever we want, and we even get to say what gets talked about.

This is a core principle cited in the e-patients white paper, which you really should read, in PDF or wiki form. More to come.

Latest on the e-Patients blog

A valuable new post:

Consumer Resources
As we continue our discussion of the definitions of 2.0 and user generated content (UGC), I thought I'd highlight some other buzzwords and link to a few consumer-oriented resources. ...

btw, while on the site, here's the quote I got today from their "Quote-a-matic":

In a time of drastic change it is the learners who survive, while the 'learned' find themselves fully equipped to live in a world that no longer exists.
—Eric Hoffer

Seeking medical data on the web

Last week's post on eDocAmerica cites a report by the US Center for Medicine in the Public Interest (CMPI) documenting that searching for medical information on the Internet can cause serious problems. Here's the comment I posted there (edited slightly for this context). Please read it listening for the shift in the wind that's underway with the e-Patient movement I wrote about yesterday.

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Having read most of the e-Patients "manifesto" (white paper) in the past few days, I find the CMPI report rather like a belching volley from a dying breed. (I know they mean well, but they don't yet get it.)

I went through this in the typesetting industry 20 years ago when desktop publishing (DTP) came along. "Horrors, don't let the unwashed own FONTS, for heaven's sake! They'll mix serif and sans in unclean ways!" And so they did. And some still do.

Similarly today, blogs mean a lot of people who can't spell get to publish, or post comments like "u r dum." But with desktop publishing and now blogs, a slew of people have learned how to use fonts (or be publishers) - orders of magnitude more people than all who'd had access to those previously closed technologies.

Of course that analogy's not perfect - nobody gets hurt due to klutzy font use (usually, heh). A better analogy is letting people drive: some people do get hurt by not being driven by a professional. But you ain't gettin' me to buy an armored Hummer and hire a driver every time I want to go to the grocery store.

I need to say here that I completely respect the people who are warning us about garbage Web content. They're right. But there's at least as big a risk from thinking the average physician (even the most conscientious ones) can be on top of all the conditions we show up with. It's especially true given the explosion of new medical information - who could possibly keep up?

While beating a nasty cancer in 2007, I waded through a ton of bad information on the web - and all of it came from respected medical web sites. All of the information I found was out of date; it had all been gathered (and peer reviewed!) before any of today's treatments existed. And when I attended a patient conference that fall, the same obsolete statistics were still being quoted!

The point isn't that "the establishment" is mucked up. A superb part of the establishment (Beth Israel Deaconess in Boston) saved my butt. The point is that there's no substitute for taking responsibility for your own situation. That includes not just learning everything you can get your hands on; it includes taking responsibility for evaluating what you find, learning to sort the garbage from the gold.

And for me the only solution to that is peer review - by *my* peers, the other patients whose butts are on the line, like mine. I joined the ACOR.org listserv for my cancer, lurked for 2-3 days, then asked "Where's the best place for me near Boston?" Within 90 minutes I had three responses, all saying the same thing.

Try asking a medical journal that question when you're in big trouble and need an answer fast. And try figuring out how to tell whether the answer you get is reliable.

Yeah, there's garbage on the Internet. There are also people dying from misinformation due to out-of-date physicians and from overloaded good physicians. (Join one of the ACOR listservs and hear the stories that pop up all the time.) The only viable solution I know is empowerment and teaching each other how to be personally responsible for what we read - and partnering with an excellent physician. It worked for me.

I knew that from personal experience - and then along comes the e-patient manifesto, saying exactly that. Cool.

Please, please, doctors (including CMPI): read the "manifesto," and please understand what it says on page 22: "We modestly suggest that the tentative conclusions below are no more 'anti-doctor' or 'anti-medicine' than the conclusions of Copernicus and Galileo were anti-astronomer."

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What do you think? This is a significant issue. You, or someone you know, will face this issue first-hand, and if you're in my generation it'll most likely happen within 10 years (or already has). What do you think? How will you advise family and friends?

e-Patient? Yes, e-Patient.

In the past few days, with my discovery on 1/23 of the e-Patient Scholars Working Group, my entire outlook on life has changed - so much so that I'm changing the title of this blog from "Patient Dave" to "e-Patient Dave."

That's because I've found my purpose for this blog. And that in turn is because my experience over the past year is a ridiculously close match for the principles and practices recommended by the group. So I think I've found the answer to a question I've asked in recent months: "What am I going to do, what am I going to create in the world, out of my experiences of the past year?"

I'd heard about this "movement" (my term, not theirs) earlier in the month from Dr. Danny Sands, my primary physician, a member of the group. I'll be saying more about the subject in coming posts, but I'm going to start with a few words and a few links. (These will be duplicates, for readers of my CaringBridge journal.)

Here's what I found last Wednesday when I googled the term. First I found the eDoc America blog, which said:

'ePatients are those that use e mail and the internet to become empowered to manage their own health and become partners with their providers. From saving lives to saving dollars, this blog both entertains and instructs in ways to use the internet for better health care. Approach with caution—this may radically change your views about your approach to the health care system!'

(The page with that text went away when the blog moved in January - but it'll live forever here :-).)

Here are a few links I've found since then:

• The e-patients white paper - a manifesto, brilliantly written, with compelling true stories that will bend your outlook on who's responsible for what in health care. 126 pages but it reads fast - someone I know read it Friday afternoon, and called it "thrilling." (The paper was a research project supported by a Robert Wood Johnson Foundation Quality Health Care Grant.)
  
  
• Their blog and its RSS feed
  
  
• A guest appearance (last week!) by group member Dr. Alan Greene on NYTimes.com. (He's founder, with wife Cheryl, of www.DrGreene.com, one of the first e-patient-centric pediatric sites.)
  
  
• An interview with group members Joe and Terry Graedon, founders of PeoplesPharmacy.com and hosts of a Public Radio talk show. (Check out their classic e-patient editorial, just last Monday: "Don't be a good patient." Huzzah!) (And no, it doesn't say "Doctors are jerks." Just read it.)
  
  
• ACOR.org, the free collection of online cancer resources founded by group member Gilles Frydman, including the [KIDNEY-ONC] kidney cancer email group that played such a pivotal role in my case last year.
  
  
• A landmark 2001 article in Wired about people taking command of (and responsibility for) their care. The article won the American Society of Journalists and Authors 2002 Writing Award for Outstanding Article of the Year: Reporting on a Significant Topic. Note - that's not "significant medical topic" or "significant e-topic," it's any topic.
  

There's much more, but enough is enough for a first post. Suffice it to say, this looks to me like the Sixties motto "power to the people," made real in the world, in a way that's touching many many people and could be touching far more - even everyone.

And suffice it to say, it's been a busy few days for me. As I've said to several friends, "It's as if I've discovered a parallel universe where everyone speaks a language I thought nobody else spoke."

I can't believe I went through last year without knowing about this group. Well, I do now.