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.

==========

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.

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?

My cousin Chris: doctor-to-be, paralyzed, blogging

I've just discovered an extraordinary blog. I got my first email about it on 3/17, but didn't realize what it was, and just now figured it out, and have started reading.

My cousin Chris McCulloh, 28, intends to become a neurosurgeon (he's just about to start medical school). In January he suffered some sort of fall and broke his neck, and is paralyzed. I barely know what to say - honestly it's too much for me to sort out right now - but he's been blogging since mid-March, and it is inspiring.

Please read Spinal Cord Injury and Healing. Look at his approach to his condition - his candor, his detailed (but clear) discussion of his condition, the resources he's gathering around himself, his attitude, and his commitment to making the most of his situation in every way possible.

His descriptions of his experiences are gripping. Very good writer. He's going to make an astounding doctor. (And check out his list of inspirational stories at bottom right, not the least of which is the story of the first wheelchair-bound surgeon.)