Sunday, March 30, 2008

A Neuroanatomist Witnesses Her Own Stroke

Wow, what a speech, tying together so many aspects of all I've studied (many of us have studied) about what it is to be a human.

Neuroanatomist Jill Bolte Taylor talks about observing her own stroke as it happened.

(If the embedded video gives you trouble, view it on the TED site here.)

Wonderful insights about the functions of the two hemispheres, and what she experienced as parts of her mental function dropped away, leaving her for a time with nothing but the experience of the moment of Now.

Aside from the inspiring beauty of her story, what smacked me in the face was the great similarities between what she says and what I discussed last year with members of my cancer community, about being at peace with it all, as Buddhists have done for millennia and as teachers like Ram Dass (nee Richard Alpert) continue to do today. A lot in common, too, with the description of psychedelic experiences such as described by Aldous Huxley in The Doors of Perception.

Powerful speaker.

I'm listening to her talk for the third time through. I know exactly what she's talking about re "no longer the choreographer of my life," and several other things, so I have no doubt at all that what she ultimately describes is available to every one of us, and that includes you.

Sunday, March 23, 2008

Cancer patient empowerment for GenX and GenY

From the e-Patient blog:

Check out this interview [below] with Matthew Zachary, founder of ImTooYoungForThis (cancer resources for GenX and GenY).
(This is from the Health 2.0 conference where Susannah Fox spoke, as I noted the other day.)

It's a perfect example of how Web 2.0 means we get to say: provide a platform (the Web) and "an open mike" ("anyone can publish"), and you may get a bunch of inane garbage, but you'll also get some absolutely wonderful creations that might never have seen the light of day.

Saturday, March 22, 2008

The Minnesota "wrong kidney" cancer tragedy

You may have heard of the tragedy earlier this month in Minnesota, in which a kidney cancer patient had the healthy kidney removed, by mistake, leaving him only with the cancerous one.

This hits home for me, since my own kidney was removed a year ago this month. Adding impact, a year before that, I lived just 15 miles from that hospital, so it coulda been me.

Some people are focusing on who's to blame, but from the patient's perspective, the screaming headline on this story is that if the patient and family had had access to their medical records, and had known that they could and should read them, this disaster apparently could have been averted.

See, here's the thing: all my life, I thought about this stuff abstractly - like, analyze analyze, should be could be oughta be. But when my ass was suddenly on the line, like if things don't go PERFECTLY I'll die soon, I quickly lost all interest in whose fault anything might be - my concern was "How can I do everything in my power to improve my odds?"

Being an empowered patient (though I didn't know the term yet), I spoke up everywhere I could, and I read everything I could in my records on my hospital's PatientSite.

As I'm now fond of saying, your time will come. Prepare yourself. Think about this stuff before you're in a crisis.

Please read my posts about it on the e-patients blog - both the original, including an important comment from a past president of the MN Urology Society, and my reply to him in a second post. Included are excerpts from my actual radiology reports, to drive my point home. (I copy & pasted 'em right from PatientSite.)

Recent posts on other blogs

Since my return 3/2 from the e-patient retreat in Texas I've been running around the health blogosphere, trying to get a grip on all the conversations that can make a difference in creating a new world for all of us. (Remember, your time is coming. Listen. Act.)

Dr. Ted Eytan is my new hero in the medical blogosphere: "e-Health. Patient Empowerment. Washington DC." Reading him is efficient - five good topics in today's brief post.

Benefits of electronic prescription ordering on Paul Levy's blog. (See the comments too. I've found that often the comments are as important as the post itself.)

Kevin, M.D. is a highly rated blog by an outspoken pediatrician who, I just figured out, is right here in Nashua N.H. You wanna hear someone saying how it all looks from the inside? Sign up to this one. Lo, look who was in the Wall Street Journal last week, as a result of being on the op-ed page of USA Today. He talks (frequently) about the shortage of primary care as a root cause of our healthcare problems. Good to see him getting some ink.

The primary doctor issue is the focus of PCPCC - The Patient Centered Primary Care collaborative. Here's a Healthcare Information Network post about PCPCC - it's cuckoo that doesn't also have a blog! (Or if they do, it's not highlighted on their site).

Earlier this month good friend Leslie Harkins met with PCPCC's Dr. Paul Grundy at the Chicago confab of the American College of Healthcare Executives. His slides are hot stuff regarding the worldwide correlation between number of primary docs and overall better health. I'll be posting those slides here shortly. (Hint: more primaries = better health AND lower costs. No surprise that the US ranks in the pits on both scores.)

As Dr. Grundy said in a comment on that WSJ article: "Demand of ourselves and our Healthcare benefit companies: Comprehensive, continuous, patient centered, personal and holistic primary care which is based on strong relationships between patients and their physician — this is foundational to good health."

Saturday, March 15, 2008

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"?

Thursday, March 6, 2008

Susannah Fox's keynote at Health 2.0

Thanks to Amir Lewkowicz of 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!)

Wednesday, March 5, 2008

"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.

  • 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.