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.

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.

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:

RESOURCES FOR INTERNET PATIENTS

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.

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.

Memorial Day 2008

Updated 5/27 - fixed typos.

1. The ceremony

Today I sang at the Groton (MA) cemetery, in their Memorial Day ceremony. This is the first time I've ever participated in such a ceremony, and it's time to say why, and what's different this year.

I came of age as assassinations and disillusionment put an end to post-WW II optimism. When I was 13 JFK was shot. We lived near DC and Dad took us to his office to watch the cortege. When I was 18, leaving high school for college, Martin Luther King Jr and Bobby Kennedy were shot.

Something horrid was happening in the country. Then the Chicago Democratic convention happened, with cops bashing demonstrators on TV while a circus went on inside. (This was when reporters had the guts to call a spade a spade, and show it.) I couldn't believe what I was seeing; I was raised an optimist, fully participating in that post-WW II sense that America was great so all we had to do was work it out by talking.

I moved to Cambridge for college, where my optimism was ultimately shattered when I saw a cop smash the skull of a kid who was simply standing on a corner, while rioting happened 1-2 blocks away. (I know, many of you have heard that too often.) In my world cops couldn't possibly have done that, but I saw it. And suddenly all the things left-wingers and pessimists were saying were happening all around.

That was a filthy, corrupt war. (Note: I did not say anyone who was in it was filthy and corrupt.) I was left with a very disspirited feeling about everything to do with the military, because it seemed so polarized: either you loved everything military or you were anti-American. I just stayed out of the conversation.

Now I've aged. I faced death myself last year, leaving me acutely wondering what we're leaving behind for the next generations. I find myself concerned, seeing the rights that make us America increasingly eroded, and wondering who's going to win that particular fight. And I thought about the people who died to win us those rights.

I realized that for the first time I have a deep respect and appreciation for those who've willingly put their butts on the line for what they believed in, and got killed: went through that portal that I faced involuntarily.

That's really something. Their integrity, standing for what they believe in, transcends any lies and corruption that may have surrounded them.

So today as I practiced (and performed) "the land of the free and the home of the brave" and "America, my home" it had an impact on me that it's never had before.

2. The state of healthcare today

At the cemetery we stood near a tombstone detailing the fate of a family. As we work on solving healthcare's challenges, let's remember what a different world it is today. (The first date is unclear in the photo - it's 1798. Click to enlarge, if you want.)

e-Patient stories: several types

As I talk to people about "participatory medicine" and patient empowerment, I've needed to think out what the term really means when the rubber meets the road - when you (the patient) get responsibly involved in your own health care. So I've been listening for stories, and they seem to fall into two categories: where doctors were helpful, supportive partners, and where they weren't.

The sources of stories are at bottom. Here's my personal concusion.


Helpful, supportive doctors

Doctors today are under enormous time and cost pressures. The e-patient paper "e-Patients: How they can help us heal healthcare", written mostly by MDs, clearly documents how doctors no longer get paid for "going deep" to research every condition they encounter. Now, with the Internet, patients can help.

• In some stories, doctors admitted they were stumped. The patient and family did deep research and found new information that turned the tide.
  
  
• In other stories, docs felt they had the diagnosis, but welcomed it when the patient and family brought new information.

That's "participatory medicine" in action.


Not-so-helpful doctors

Other stories unfortunately echo the stereotype of doctors who think they're god-like.

• Some told of doctors who were arrogant. One patient was asked "Who has the degree here, me or you?"
• Some doctors poo-poo'd the patient's concerns (when they felt "This treatment doesn't seem to be helping me"), and the patients turned out to be right.

"E-patient" means you and I know we can participate in our care; expect to have our questions honored; are willing to learn how to research effectively.

Below is a list of the places I've come across stories. This isn't a scientific study - as one of the e-patient doctors says, "The plural of anecdote is not data." :-) This is just me sharing what I've observed.

Most of these stories are just a few sentences. Well worth reading, if you ask me.

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Sources of stories

Two weeks ago on the e-patient blog we started collecting e-patient stories. It started with an excerpt from Randy Pausch's best-selling The Last Lecture, demonstrating how he matched the e-patient model: actively engaged, learning everything he could, participating in his own care as much as he possibly could - and being fully supported in this by his care team.

Comments on that blog post added five more e-patient stories.

At least another dozen stories are in the e-patient paper (see link above).

Then, CNN.com drew quite a reaction when its "Empowered Patient" feature wrote a column "5 mistakes women make at the doctor's office". (That's a heck of a title for a feature about empowerment, isn't it?)

Dozens more e-patient stories were added to comments on that article and on the e-patient blog's post about it.

More on Google Health: two reasons to be wary

(For the impatient: if you read nothing else of this, be sure you read David Hamilton's Seven Reasons Google Health Is Overblown.)

As the Google Health story has fleshed out in recent days my view has become clearer and stronger. Then, yesterday at work I saw a demonstration of Google ethics that annoyed the crap out of me.

The crux of it is trust and trustworthiness. The Federal HIPAA law puts strict penalties on a provider who leaks your data, but Google's not subject to HIPAA. And their password security is really weak, unlike bank web sites.

A) Bloggers' views

• The best commentary I've seen is David Hamilton's Seven Reasons Google Health Is Overblown.
• The discussion on the e-patient blog continues.
• Hamilton's second post,
Google Health Privacy: All Talk, No Teeth?, includes the tip that Google Health's terms of service say you will defend or settle any lawsuit by a third party, e.g. your state's attorney general, about your use. And Google's penalties in any case are limited to $1,000.

B) What happened at work

My company gives Google thousands of dollars a month for Pay Per Click (PPC) advertising. (We bid to have our ads displayed when someone "googles" specific phrases, such as 'online appointment software'.) Every time someone clicks one of our ads, we pay Google, regardless of whether it turns out to be a legitimate buyer. If carefully managed, it's worth the risk, and we put a spending cap on it, which we rarely reach.

Well, yesterday my PPC consultant noticed that Google just added a feature without telling anyone that will spend our unused budget to display ads for phrases we didn't bid on.

Details in this post.

I'm all in favor of modernizing healthcare, particularly making it easier to do what I want with my data. But I think it should be done by a non-profit entity, using open source software.

The Launch of Google Health

There's a lot of talk this week about the launch of Google Health. As much as I love everything online, I have grave concerns about this. I wrote about it here in January, speaking on general principle. But now that the thing is finally launched, the full terms of service are out (the fine print), and my concerns are even greater.

#1 on my list is that due to some legalese (Google itself isn't a healthcare provider), Google Health is not subject to HIPAA privacy regulations. Google isn't required to observe HIPAA protections to keep your data private, and there are no legal consequences if they don't.

Of greater concern is that the whole point of Google Health is that they send your information to others you select, at which point the data is completely out of Google's control.

And that doesn't begin to get into the sociological / political concerns I raised in January - questions of what to do when Google says "Really, just trust us" in the absence of any policing.

If you want to know more, explore these posts (and comments):

• The e-Patients blog: Google releases Google Health
  
  
• Slashdot (a well known tech blog): Google Health opens to the public. Those people are no fools, they have lots of experience with Google (for better and worse), and they have fun attitude. Some of them are pointing out that HIPAA obviously needs a major overhaul.
  

I'm so concerned about this that I've written my concerns on the blogs of my hospital's CEO and his CIO (top computer guy). The CIO is on the advisory council for the whole Google Health initiative, and I really want to know why they think the privacy issue (which is enforced on everyone else who touches your data) isn't a concern with Google.

Let's hope it turns out there's actually no privacy concern. Then all we'd have to worry about is whether to trust Google in the first place, given their track record as I've described below.

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

Patient-Centered Primary Care

I've recently been learning about a movement that started forty years ago: the "medical home." This is the idea that each of us should have a place we call home, medically. At first it was about keeping all your records in one place, but now it alludes to the reality that 40% of Americans don't even have a doctor's office they can call "home."

And the movement asserts that there are real, verifiable, measurable consequences of lacking that continuous care from a primary doctor who knows you.

I learned about this via the Patient-Centered Primary Care Collaborative (PCPCC), an employer-based coalition founded by IBM. Think about it: since employers pay the lion's share of health insurance, they have a strong interest in improving the cost-effectiveness of the health care they buy.

IBM also happens to employ people around the world - so they have tons of data about which systems work better and cost less. Guess what: there's clear evidence that where people have better primary care, their total healthcare bill is lower and their outcomes are better.

Yes, what works is to have a good old-fashioned family doctor, who actually knows who you are!

Here are some slides that have been loaned to me by Paul Grundy MD of IBM, chair of PCPCC:

| View | Upload your own

Disclaimer: I haven't personally done the research to verify the graphs shown in the slides. Anyone who has information to support or discredit these slides, please comment here.

No flaming, though! This isn't that kind of blog. Just information, please.